The Incredible Shrinking Woman

Right now someone is packing for a research trip to Antarctica. Swimming with dolphins. Having their first dance.

Someone is falling in love on a bridge in Venice. Ziplining off a treetop platform. Spelunking in a cave in near total darkness.

Someone’s life disappears into the shadows of another’s big moment.

When the unit of measure plucked from the shelf, someone always falls short.

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Today I coffee-Zoomed with a colleague. I haven’t seen or spoken with him since my most recent medical leave began seven months ago. I’m back but only half time and with a pile of accommodations in place. These include telework and a flexible schedule so my office connections are much weaker than they used to be. Setting up occasional virtual visits is my attempt to mimic the accidental collegiality that happens more naturally in the office.

We batted around small talk and after a round of my instinctive positivity, this question came at me:

“So at the end of a few hours of work, are you just so completely exhausted that you collapse?”

I mean. Yeah? Unequivocally and utterly Yeah.

But that’s only half the answer.

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I call myself the incredible shrinking woman. For over two years, I’ve  been holding myself up against an earlier version. A self who was and no longer is. 

At first, this made sense. How else to set and stick to new limitations? For a time, holding my body’s changing capacity against its previously healthy baseline helped identify triggers for PEM crashes. It also provided data for what might be a flare-up vs. the normal flagging energy of an aging body.

Over two years, though, those once-upon-a-time measures of well-being disappeared into the horizon behind me.

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Someone is rising over the hills in a hot air balloon. Lifting off from the dunes on glider wings. 

Someone is soaring beyond the clouds in prayer in meditation. In a lucid dream. In a daydream. 

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Existing through this illness is like living inside a chrysalis, one with a painfully slow incubation. Everything is compact, contained. Inside this pocket of life, transformation may be occurring, but that change is as microscopic as it is monumental. It takes a keen eye to see it. 

I am beginning to accept the possibility that whatever exists within the walls of this tiny cocoon may comprise the sum total of my life to come. It could happen that there is no other side. That this small life is where this illness places me until the end of my days.

Even if the fates are smiling and bless me with recovery, the woman who emerges from this is not going to show up as Shannon of Yore. She is gone.

The longer I live beyond the summer of 2022, the more the new me, the one born out of COVID, becomes the real me. 

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Someone is feeding a walrus. An infant. An aging parent. A lover. A neighbor. A whole colony of feral cats.

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So often, the afflicted talk about the longing to return to our before-lives, to who we “really” are. It pulls on me too, the legend of the old days. In my sorrow, a rehearsal of the same tale. Circular conversations with doctors, colleagues, friends and family. Even my very own self. I may as well be parked on the porch rocker jabbering at anyone who will listen (and a bunch of people who would rather not) about Crazy Auntie Shannon. 

“You should have seen her, she was unstoppable! Did I ever tell you how she hiked a stretch of the Appalachian Trail solo when she was 27? She hosted poetry open mics, called herself the Slammistress! She laced up her sneakers and ran all over town on her lunch breaks at work. Energy like you’ve never seen! She danced blisters onto her feet and showed up at every Pride march ready to rumble. I wish you could have known her. She would have dragged you out to some mountaintop and made you do haikus about the mushrooms that festooned the path on your trek to the summit…”

See what I did there? Even now, for you, dear reader, the track is on repeat. I’ve got something to prove, even if I’m not sure what that something is. Maybe that I have value because of what I accomplished in some long-ago chapter? Or that I’m worth paying attention to? The compulsion to keep you entertained borders on pathological. I keep rewinding, replaying, hoping you’ll hear the artistry in my story, that you’ll stay a bit longer. That you won’t give up on me. 

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Someone’s hands are making noodles. Throwing pots. Tattooing a bride. Playing pat-a-cake. Weaving a death shroud. Laying a cornerstone. 

Someone’s hands are turned upwards towards the sky in prayer.

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The pull to hang on has jaws like a pit bull. After all, that long-ago Shannon is the only me I’ve ever known. 

Reminiscing is equal parts comforting and agonizing. Deep in my bones, I understand that no one will ever know her the way I did. No matter how much I try to get people to experience the textures of her, it’s all from the distance of story. 

As for the me now? I’m the one telling that story. This is the only me that anyone meeting me now will ever know. This is the only me that I get to live with, the only me that you get to befriend.

When I stand back and try to take the measure of my current life, it occurs to me how foolish the task is. What is a small life? What makes a life big?

Sure, someone, somewhere is capturing images from the James Webb telescope. Someone is handing out meals at a refugee camp. Someone is cradling their newborn grandchild. It doesn’t matter how magnificent our accomplishments, there will always be bigger lives than ours. We each get to decide if we’re going to see life as something that has a size, or if we’re going to appreciate what we hold in our hands.

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“So at the end of a few hours of work, are you just so completely exhausted that you collapse?”

I bite back my habitual perky response (“Getting better, more good days than bad!”) and instead consider what the truth would look like. Do I give my colleague a grim reminder of how intractable this illness is, how many millions are suffering without care, how meager the research funding? Do I answer from the perspective of the Shannon of Yore? She would have been gobsmacked by the massive change in her circumstances. She could not have imagined how deep in her bones fatigue could live. Some days it weighs so much, it crushes the capacity for the most basic activities of daily living. She wants to answer, that old self, and make him see how far she is from well. 

But I am not that Shannon of Yore. I am no longer interested in measuring how I feel at the end of the day against anyone else’s yardstick. Not even one my old self tries to press into me.

So I answer my colleague truthfully. 

Yes, I’m completely trashed by the end of the day.

But.

But after two years, I’m better able to tell the difference between the kind of exhaustion that leaves room for recovery, and the kind that triggers a crash. This took so much trial and error. Returning to work after two previous FMLA medical leaves, I tried to leap back into my usual full-time duties and slammed straight into a brick wall.

This time around, I am inching along with baby steps. Reading the signs. Pacing with care.

On work days I only put in about 4-5 hours, many of them from a recliner. I take rest breaks every two hours, solid naps with an eye mask and earplugs in a dark room. No additional creative projects, physical activities, or social engagements. Headphones to drown out neighborhood noise. Snacks and smoothies prepped ahead of time to cut down on decision-making. My partner comes by regularly to handle the chores and home maintenance tasks I can’t manage. My parents pick up the groceries and even go so far as to put them away in the kitchen.  

So yes. I tell my colleague this truth. I do indeed collapse at the end of the day. Sometimes I am too exhausted to speak, to think, to bathe. But because so many accommodations and supports are in place, that exhaustion does not lead to PEM. My baseline is low, but for the first time in two years, it’s not getting lower.

This me now gets to live inside a cozy, safe cocoon, just the right size for my capabilities. Sure, this small life is often terribly tiring. But I am ok. I’m fed, the kid is healthy, the house is intact, my spirit is well. 

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Right now someone is writing a slice of her story for friends to read. Pausing to pet a sweet, old dog curled on a couch. Sipping tea from a mug her son gave her for her birthday. Readying herself for a delicious afternoon nap. 

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With rest and care, my body will be able to do it all again tomorrow.

It may be a small life. But living it is a HUGE win.