The Unseen Blessings of Long Covid

After the grief came the reckoning; a reassessment of what was left-

of me,

of the life I knew. 

Questioning “Am I Enough?”

Learning to live within the limitations of this “new to me” body.

Then, with time, my own journey from captivity to freedom-

Finding the space between boundaries,

Room to breathe.

New ways to do old things.

I never left my body- have barely left the house.

Still, the journey back to myself has been arduous.

I am forever changed-

And, yet, still me.

I continue to heal but I’ve thrown away the map.

I know now that I can find my way back from anything.

Feeling Stupid: A Moment in Time

“I’m going to throw you a bean bag,” the vision therapist says to me, “and I want you to tell me two things that it’s not by the time you catch it.”

We are working on getting my eyes and brain to work together- tracking an object while managing a cognitive task. I ask her to repeat the instructions and then I say them back to her to make sure I understand what she is asking me to do.  Then, the first bean bag comes my way.

“Yellow,” I say. “Round.”

“Good,” she says. Then she throws the second bean bag.

“Yellow,” I say again. “Smooth.”

“But it is smooth,” she says. “Try again. Tell me two things it’s not.” 

I toss the bean bag back and when it comes back to me again I say, “Yellow.  Fuzzy.”

“No more saying yellow,” she says. And she throws another bean bag.

I am not prepared this time and the bean bag lands in my hands without me saying a word. I look down at it, then back at the vision therapist. “I wasn’t ready,” I say. I toss it back.

“That was the idea,” she says smiling gently. She throws it back to me. I am expecting it this time- have seen it already even, and still I am silent. 

“I’m sorry,” I say. “I’m very tired.” I look at the bean bag in my hand and try to think of one word that does not describe it. I am drawing a blank. I think I am going to cry. 

“We can stop,” the vision therapist says, “I don’t want you to crash when you leave here.”

I nod in agreement, embarrassed, relieved. 

I get into my car and just sit for a few minutes, too tired to drive, and frustrated with my brain. I remind myself that I am still smart. I have not lost IQ points. My brain just gets tired easily now and needs more time to process new information.

But I can see myself standing there, staring down at a bean bag, unable to come up with one word that does not describe the beige, canvas, square. I could have said almost anything: green, leather, triangle, cat, ball, phone, ruler, flashlight, llama- any of those words would have worked and any number of others. I’m still smart, I remind myself.

But at this particular moment, I feel pretty stupid. 

Persistence

I finally ordered new socks, having worn holes in my old ones after three years of pacing the house with little need for shoes.  I am worthy, I have decided, of socks with no holes.

A handful of dear ones return again and again.  Old relationships find new footings under changed circumstances. When they leave, our conversations seep from the holes of my swiss cheese brain but I remember that together we laughed and that they listened and for a while I felt content.

I have woven a ladder of rope made from the strands of my stubborn love for life.  I will use it as many times as necessary to climb out of the pit of despair and self pity that I sometimes fall into when I am not paying attention. 

When I am paying attention I know that I am worthy of socks with no holes, I have dear ones to laugh with and to sit with contentedly. I have a stubborn love for life. Therefore I must persist.

Courageous Heart

All I want, really, is to come out of this with my core integrity intact. 

And to not be consumed by the smoldering fear that threatens to burst into flames.

There is, of course, the fear that I will not get better.

But there is also fear that I won’t recognize the version of myself that waits for me at the end of the road to recovery.

I don’t mean for this to be sad. 

It is merely an acknowledgment of my awareness that I cannot come out of this the same that I entered in.

I can already feel that my brain is different: slower to process, mixed up and muddled, riddled with doubt, a GPS in perpetual reroute.

So I wonder…

…with my brain on hiatus, can my heart be my compass? My insightful yet compassionate guide? The calm eye in this cytokine storm? 

Guide me, courageous heart. Stay loyal and true.

What I need most of all is to come out of this with my core integrity intact.

The Waiting Room

In my brain there is a room.

It is vast and white. The lights are bright, fluorescent, & unforgiving.

The room is empty aside from one, hard, plastic chair.

It is the kind of chair that is a relief only to one who has been standing for a very long time, and even then for only about 30 seconds. The chair provides little support and I slide down, scooch up, slide down, scooch up, finally gripping the sides of the chair in order to stay upright.

I become aware of music playing in the background. It is an instrumental version of “The Girl from Ipanema,” and it plays on repeat.

As I try to remember any of the words to “The Girl from Ipanema” I hear the sound of clicking heels on the shiny white floor tiles. When I look up, there is a woman approaching me. She is unremarkable in appearance, neither pleasant nor unpleasant in demeanor. She carries a clipboard and wears a long, white, lab coat with a name tag that reads, “Hello, my name is Hope.”

Hope stands in front of me now, looks at me over her clipboard and asks, “What are you waiting for today?”

“I am waiting to get well,” I tell her.

Hope nods and makes a notation on her paper and asks, “and what will you do when you are well?”

This feels like a big question- worthy of a big answer.

I think of a time when I had a vision for my future. A time when my goals were lofty and I lived on the edge of passion and fear. I did some of my best work in that place. At least I think that was me. I feel detached from that version of myself. Barely recognize her anymore. Can’t even imagine what it would be like to return to that self.

Hope is watching me, pen poised over clipboard. She is waiting for an answer.

I search my foggy brain for something that rings true.

Finally, I say, “I want to take a walk. I want to read a book.”

Hope writes down my humble but honest response and asks, “Is that all?”

I sigh. “Can it be enough for now?” 

Hope looks at me for a moment- still gripping the sides of the chair. 

“I suppose so,” she says before she turns and walks away. The sound of high heels on tile slowly recedes until I am once again alone with the girl from Ipanema. 

Waiting.

Lantern

A lantern does not pretend that it is not dark

Or tell you that your fear is without merit.

A lantern does not tell you to cheer up 

Because the sun will come up eventually.

A lantern simply shines a light-

Perhaps as if to say,

“I will walk with you until morning. You do not have to face the darkness alone.”

This is simply life…

“Not much has changed,” I thought, feeling discouraged as I sat on the couch to watch Erev Rosh Hashanah services on Youtube for the second consecutive year.  After dedicating so much time and energy over the past twelve months to healing and finding answers, I had hoped to find myself in a different place than I had been the year before.

And yet…

“Not much has changed,” I thought, feeling surprisingly content having just attended the in person shofar service at my synagogue the next afternoon. After reuniting with friends and basking in the joy of being with my faith community, I was startled by a revelation.

I have been very focused the past year on how different my life is as a person with chronic illness, and I’m not dismissing what I have lost or missed. I would be remiss, though, to not recognize what I have gained. With another year in the books (and at 2.5 years post my acute Covid infection), I am starting to recognize snippets of wisdom and shifts in perspectives. And while things have felt different than they used to in the day to day, when I look at the bigger picture I’m also realizing that there are constants that remain and I take comfort in this.

Throughout my life there have always been and will always be:

Days when I laugh a lot and days when I am weepy;

Days when I rejoice and days when I grieve; 

Days when I feel calm and days when I can’t sit still.

Yearning for simpler times one day while seeking to challenge myself the next;

Courageously charging forward today- then stopping at my fear tomorrow.

Hopeful days, despairing days;

Craving connection one day then seeking solitude another. 

When I think about it like this, life feels as familiar as ever. 

I’m feeling my way through each day. 

Just as I always have. 

Healthy or otherwise.

This is simply life and I am simply living.

Holding On/Letting Go

I have learned that so much of life is knowing when to hold on and when to let go.

And so it has been these past two years with Long Covid:

Letting go of ambition while holding on to intellectual curiosity.

Letting go of busy while holding on to self worth.

Holding on to hope for a full recovery while letting go of expectations of a full recovery.

I recently purchased a wheelchair so that I can more fully participate in life. I have decided to name her “Radical Acceptance” in the same way that people like to name boats. For short, I will just call her “Rad.” That way I can say “My wheelchair is rad!”  Holding on to my sense of humor.  Letting go of self consciousness and caring about what other people think.

Holding on to solid people with good hearts who love me unconditionally. 

Letting go (without judgment) of those folks who just can’t right now.

Letting go of fear and anger while holding on to joy and steely determination.

Breathing in- holding on to what nourishes and heals. 

Breathing out- letting go of what no longer serves me.

In The Wilderness

It used to be that the wilderness was an imagined place from a fever dream; a dense jungle, thick with vines. Hiding from wild beasts snarling from behind shadows. Waking up breathless in a cold sweat.

It used to be that the wilderness was a biblical reference; my people wandering through a vast desert, 40 years of hot sand between toes, waiting to be ready.

The wilderness used to be elsewhere, the subject of stories, a fictional location far from home. 

Presently, there is no need to imagine or travel to faraway lands to know the wilderness. I am the wilderness and it has left me bewildered. My reflection looks the same and yet nothing feels familiar.  My body has turned on itself, leaving nowhere to hide from the mysterious forces that lurk in my own shadows.  

I embody the wandering Jew, moving slowly in a circuitous route from the bed to the couch to the screened-in porch and back again. Exhausted, yes, but also restless and impatient. Am I also waiting to be ready?

Lost in the wilderness of the American HealthCare system, I wander from doctor to doctor seeking answers. They, too, are lost and try to find new locations using old maps. The health insurance company appears to be in a constant state of identity crisis. Will they help or hinder? Simplify or complicate? Play hero or villain? 

I remember cartoons I watched as a child: thirsty, weak characters crawling through deserts in search of an oasis, only to find a mirage where the water hole should have been. Without a map it is hard to know where to find respite. Then, I remind myself that even the Israelites were nourished with manna and the densest jungles contain delicate, complex ecosystems that sustain life at all levels.  Perhaps, everything I need at this moment is already within me.

I can be curious about, even find humor in the sounds of the MRI machines, a robot symphony of clunks, hums, and whirrs. If I listen in just the right way, I swear I can hear a slightly off version of my name being repeated rhythmically over and over again and I feel amused. Even amongst the cacophony I doze off and dream of chickens. I am grateful for my brain’s ability to entertain itself- even now.

I am curious enough about what is happening in my body to expend precious energy to follow the science, read the studies, watch the leading long-Covid experts give recorded talks at conferences, educating myself so that I can advocate for myself.  I am brave enough to ask my doctors if they have looked at any of the research as they insist repeatedly, what has already been debunked. Can I encourage my doctors to think beyond their borders? 

I feel grateful for the scientists and doctors who have been tirelessly seeking answers about long-Covid, who are educating their peers at conferences, and who selflessly give time to patient advocacy groups to do Q&A videos so I, along with 22 million (and growing) Americans can begin to get our questions answered even as the waitlists to get an appointment at a quality long-Covid clinic extend months to over a year. I am grateful for my long-Covid support group- the only ones who I think really understand what the past 28 months have been like.

Curiosity, Knowledge, Courage, Self Advocacy, Gratitude.

Perhaps it is true that not all who wander are lost. Perhaps it is truer still that those who wonder are guided by an internal compass. If I keep asking questions; reframe and stay curious; reflect and regroup; retreat and recharge; restore and REMEMBER who I am at my core, I can’t really be lost, can I? As long as I know who I am it doesn’t matter where I am.  I will always find my way, even in the wilderness. Maybe the wilderness isn’t where we lose ourselves but where we find ourselves.

I am still a writer.

This I know for sure: I just can’t write the way I used to.

I have always been a cerebral person- my brain, on any given day, like Grand Central Station. But instead of trains racing down tracks and passengers rushing to make connections, it is my thoughts that race and ideas that connect, and whichever issue or emotion is at the forefront of my mind acts as train conductor. My brain is a loud, busy, curious place- one which doesn’t quiet easily. The world around me is also loud, busy, and curious and I have always made sense of it through writing. Pre-Covid, I could sit and write for hours. The narratives in my head would weave together into stories and all I had to do was sit at my computer and let my fingers do the talking. Only then, having done my best to make sense of a nonsensical world, would I be able to park each train at its depot and shut down the train station lights for the night.

Unfortunately, the fatigue of long Covid means that my brain is no longer the steam engine it used to be, replaced now by the much slower but stubbornly persistent, “little engine that could.” I think I can. I think I can. I think I can. Already, as I sit here writing this, only two paragraphs in, I can feel the pressure at the edges of my eyes bringing with it the promise of a near future  headache that will feel like someone is trying to juice my brain like a half grapefruit.

Lord knows there is much about the world right now that doesn’t make sense. So if I could, I would write at length, for example, about bodily autonomy. I have been thinking a lot about how when I found out my second child would need to be born via c-section because they were in breech position with the umbilical cord wrapped twice around their neck I decided that I was really done with pregnancies and since the doctors  were going to have their hands all up in there anyway, I wanted them to do a tubal ligation. Both the OB and the nurse midwife tried repeatedly to change my mind- “you’re only 33,” they said,”do you understand that this is a permanent procedure? What if you change your mind?” they asked, and even immediately after my baby was, thank God, born healthy they persisted, “what if God forbid your baby dies?” 

I insisted, and they acquiesced- sort of– they wouldn’t cut or cauterize my fallopian tubes- but they would clamp them- a procedure that could potentially be reversible- you know, just in case. I have never for a moment regretted this decision. And if I were writing about this at length, I would be sure not to leave out how other women I know were just told “no” when asking for this procedure even at 44 as if grown ass women are unable to make educated decisions about our own bodies. 

If the pressure in my head had not started creeping towards my ears;  If my muscles hadn’t started twitching and my head was not now shaking, I would also write at length about youth mental health. I would write about how kids are losing their ability to trust themselves and their own judgment about what they want or need because they have been fed by society, parents, schools, and the standardized testing companies a tremendously narrow definition of success- success which can only be reached by a very specific and expensive path. 

The kids, I think, are not alright.  We are conditioned as parents or teachers to play cheerleader- to tell our kids and students to never quit- to just keep going.  That if they just put their heads down and muscle through, keep pushing, work harder, always persist, that we will be so proud of them, perhaps they will even gain entrance to that elite college that holds the only key to a future in which they are “a somebody” that matters. We often forget as grown ups, that there are times that we should absolutely not continue down a path that is causing us physical, emotional, or psychological harm. We forget- or maybe never realized in the first place, that it is actually not our job to always play cheerleader or say, “yes you can, you must” but to help kids discern when a situation calls for resilience and when it calls for retreat.  That retreat is not giving up but strategically pausing, reflecting, and adjusting before continuing forward, sideways, or even retracing steps to figure out where they lost themselves in service to a false prophet. And if I didn’t have to keep having to put my head back on the pillow and close my eyes, I would write about how we are currently doing our young people a grave disservice by not sometimes telling them, “you can stop now. You have done enough. It is time to rest.”

If 30 minutes of writing didn’t then force a 90 minute nap and then a 3 day hiatus from working on this piece out of fear it would trigger a fatigue crash that could land me in bed for weeks, I would be writing at length about these and so many other things.

My brain is still like Grand Central Station, with thoughts and ideas scurrying to and fro, urgently trying to make their connections.  My writing process, however, feels less like the vast expanse of a meandering Amtrak trip through the Canadian Rockies, with its scenic vistas out the windows of a sleeper car.  Writing is now more like a subway commute, one with frequent single tracking delays. Write and then stop. Write and then stop. A little less graceful, leaving me questioning when I will see the light at the end of the tunnel, but still, when I can do it, gets me where I need to go.

I think I can. I think I can. I think I can. 

This I know for sure:  I am still a writer.