Hope Notes (for next time)
By Keren Gudeman
It’s 4 a.m. I pace our first floor and Todd stands near, arms at his side, a whole-bodied presence.
What can I get you?
I don’t know! It hurts ithurts ithurts…
I adjust my left arm up and down, and bobble my neck side to side.
Where does it hurt?
The back of my shoulder but also my arm. Down to my hand!
I cock my neck to the right, trying to find reprieve.
Oh god, it hurts.
I throw my left arm over my head, hand dangling helplessly at my ear. Maybe my flailing will untether the knot in my back or, jostle a God I don’t believe in to send help.
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I know you said I’d be sore the next day, but is this normal? Did something go wrong in our session?
If the pain was from me, trust me, you would’ve felt it right away. I’m sure we just aggravated the area. It’s sore. Try ice and painkillers.
The chiropractor is on speaker phone, so her hollowed voice is perched on a pillow in my lap. I’m tucked into the corner of our oversized couch, neck held up by a cushion, body tense. I jiggle my legs to distract myself and channel the discomfort into something in my control.
I notice: “we.” She’s drawing her boundaries, making clear a shared role in my pain. Her lines bring mine into relief: I’m hurting and scared. She’s afraid of getting in trouble. With herself? Me? The law? A God?
Right now, I need one more thing from her:
I mean, it’s not just in my shoulder anymore—the back of my arm burns. I’ve never felt that. When will it stop?
You could call your doctor if you need stronger pain medication.
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The deep ache settles into the back of my shoulder and armpit. A hot curling iron was left on, and I managed to lie down on it.
No position brings relief. Even with the prednisone and opioids deep in the corners and curls of me, I’m not comfortable.
It’s 3 a.m. I turn on the TV to ward off the darkest hours of these sticky July nights. Our old house has no AC, so I blast a box fan into my couch corner. I watch 20-year-olds with so much hope they’ll find a life partner, that they travel to a far-off sunny island to be filmed competing for love or attention, or both. The scavenger hunts and obstacle courses that pit them against each other make their desperation clown-like: muddy limbs akimbo, a set of red lips emerges to kiss a set of chapped lips, before falling back into the muck.
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My body has always been fortified by an immutable fact: my athleticism. I use my body to explore my environments, to connect with others, and with myself. I was a college athlete; I am a lifelong runner. Threads of movement, embodied patterns and improvisations, sew me up whole: soccer, frisbee, biking, skiing, running, chasing my kids, dancing, playing.
Now my body is a container for a new kind of experience, a horror that demands description. Philosopher Elaine Scarry writes about the all-encompassing nature of pain and our inability to fully communicate its experience in words. She writes that pain actively destroys language. Yet even when we’re reduced to “cries and moans,” there is still hope: humans have the capacity for imagination. For creating symbols that represent our pain so that it can be shared, and in turn, help us make meaning, and heal.
What if I’m not strong enough? What if it doesn’t go away.
The pain. The new container.
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I move in slow motion as my three young children hum through their summer days, disappearing to friend’s houses, onto bikes, and into bathing suits for sumptuous afternoons. I’m both agitated and languishing, but try to hide behind reassurances that I’ll be better and able to play soon. They know to pretend mommy has a bubble around her, a no-touch policy. They’ve gotten used to pandemic bubbles, so I become a backdrop, laid aside just-so.
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"Hope is no evidence or guarantee, but you go to that doctor anyway.
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A friend drives me to urgent care. As I unwrap myself from her front seat, she wishes me luck and drives away to her summer day.
Inside, the nurse with kind eyes approaches me in the waiting room, as I pace on the thin carpet, an exaggerated zoo animal.
Would you like me to just up your pain medication?
I look in her eyes, a small humanity above her mask, then back at the floor, resuming my leopard-walk. Next to her, a young medical student, bright-eyed and badged, is watching me closely too.
No. I need to see a doctor. There is something really wrong with my shoulder.
I was at urgent care the day before, and I’m back again. The diagnosis was something amiss in my neck or upper back. I was to wait it out, and given a slate of drugs that may, or may not, take time. But I don’t trust their definition of time because they don’t really hear me yet.
When I see the doctor, he is staring at his computer.
What brings you in today?
There’s something really wrong with my shoulder.
Where are you feeling pain?
It moves but mostly on my back and down my arm.
Does anything help?
Sometimes, if my arm is above my head. They said yesterday it’s not my shoulder, but...
He cuts me off.
If it was your shoulder, you wouldn’t be able to hold up your arm.
From his perch, he orders x-rays but he’s sure it’s just a herniation that will resolve on its own. That I just need to manage the pain. My cat ears pick up what wasn’t said:
What the fuck are you doing back here, wasting my time?
You must be an anxious and weak type. Tsk, can’t handle the pain.
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"Hope is the bravest choice you can make today."
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On one of the middle days the pain in my tricep is a cramped muscle, aching to my elbow. It doesn’t stop. The rest of my body moves constantly, jiggling to find another position that must be better.
My first and second fingers are now numb. I’m sleep-deprived and desperate, so I imagine pain smiling as it paints my fingernails and wraps my forearm in a vice. Its snaky arm coils around my shoulder, licks my armpit with fiery breath. It has one mouth speaking in two voices. One screeches of the wrongness of it all, of the something’s-not-adding-up. The hollowed-out tube-of-a-voice whispers about my untethering from all that I knew of myself, in my body.
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It’s a constant reference point, so I begin to take notes. I need to be a reliable narrator, a fool-proof patient with trustworthy descriptions and perspective.
(And because I’m tough, and I need them to know it.)
My list is made up of absences, so I can justify the asks for drugs and for insurance to finally sign off on the MRI.
I can no longer:
➔ Run. Or walk.
➔ Pick up my three children. (Even when they cry)
➔ Lie down next to my kids in their warm beds, next to their dolls.
➔ Change-the-sheets, do-the-laundry, make-dinner, find-the-right-pillows, write-down- the-prescriptions, fill-the-space.
I believe I’m helping the nurses and doctors, my notes. If I don’t record the experience, how can they pin me down, measuring me against their other patients? How can the medical student learn how to treat the next one?
On a different middle day, I’m stuck on the couch, on the phone for two hours, because I have to get urgent care to send the x-ray so insurance can pre-approve the MRI. So my pain can be justified on their papers.
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On the 13th morning I hear Enya’s voice on the speaker in our kitchen: “Who can say where the road goes, where the day flows, only time…”
In college I listened to Enya while studying. As an anthropology major, I once took a class called “Pain and Suffering,” which offered a cross-cultural exploration of human discomfort and pain. So far removed from the famine and torture and medical emergencies, I recall now an intellectual, mind-but-not-heart understanding of the universality, and specificity, of suffering.
How should we characterize the bottom-dropping-out of our collective humanity? The pandemic and anti-maskers. Conspiracy theories in lieu of conversation. How can we adequately name our inability to see ourselves from above, how the earth rotates and careens through space, regardless of us. Our suffering is both shifting and undeniable.
And I cannot describe how the left side of my body doesn’t want to engage with my life. It knows, now, that life is full of bad surprises. How pain can turn a new dial, to a higher setting than two weeks ago. My notes become repetitive. “left arm dangles uselessly,” shows up more than once.
In some ways, the chiropractor’s “we” was the greater harm.
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I endure the MRI, crying hard, asking the tech to stop mid-way through. His frustration is clear even through the loud music they’ve piped into my earphones and the clunking of the oversized metal tube. You see these on TV and the experience is extraordinary and melodramatic, so you don’t spend any time thinking about it until you’re inside of it.
The noises are so big, there’s no way to say you’re fine.
After I get up off the metal table, with help from a nurse, the tech looks at me differently; I know there’s something from the scan that helps him understand my pleas to stop.
There is a type of pain called referred, which means you feel pain in a part of your body that you shouldn’t.
Another pain is called scapular, located in the shoulder blade, but the doctor doesn’t believe that one.
And the one I have, it’s called radicular. Its margins are hard to define, but it is described as lancinating (stabbing or piercing) and is felt both in the skin and deeply in the muscles.
The MRI shows a badly herniated disc. The 2D blurry-white helps me imagine the innerworkings, the something-is-pressing against my spinal cord. An answer or two. Pain’s horror and slickness and multitudes now just a mechanical snafu. The pain changes with information and visuals about the bones and nervous system, my spinal cord and the circuits of pain. Signals switching on and off.
The herniation is bad enough that two surgeons recommend spinal fusion, but the surgeon I go with tells me he believes chiropractors should never be allowed to adjust necks. He’s seen a woman my age—who also had children—die of a stroke. He recommends the least invasive surgery, with less cutting and a shorter recovery. And because I’m in good health, he offers a portrait of a future not yet written down.
I talk to a friend about the recent death of her father. She is raw with grief and our conversation is brief. I do the wrong thing and compare our pain:
I think we are both in suffering.
She’s quiet. I want to comfort her but we are talking through a computer, so we can’t hug. I also realize I’m now an imposter because I have something in my pocket unattainable to her: a prognosis.
Once I have better medication and a clearer path, the pain is harder to draw lines around. I second-guess myself and wonder how much of my imagination was involved in the sensations and paralysis from life. Did I imagine the intensity, or frequency? I no longer rely on metaphors, the way Sonja Huber describes living with chronic pain, “If I don’t feed it a metaphor every day, my pain devours me in a psychic sense.”
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This is not a story about doctor care. It’s about reaching around pain to find a one-eyed doll for company, hiding behind the treasure box.
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As I recover from surgery, sometimes I find myself forcing hope to happen, a crank that needs turning.
And then I’m lying in bed, listening to Todd read about Meg from A Wrinkle in Time, her bravery and fear and rising to the occasion. And I feel my son’s warm body, splayed atop mine, his tummy rumbling. The inseparableness of it all.
His twin asks if she can put jello in my hair tomorrow to make it up fancy. And my 8-year-old is on the other side of the bed, so we are all connected in a cocoon of early winter and stories read aloud and breathing together.
And I remember visiting California, and collecting the shells and sea glass, all of those impossible colors, so that each child has their own special collection. We had spread them out on the sidewalk after our picnic lunch, and we saw all of our colors together. And there were sharp edges on some of the sea glass, so we wondered if we should throw them back.
Keren Gudeman is a writer, artist and explorer living in Minneapolis, MN with her husband and three children. She enjoys running, biking, George Saunders and tortilla chips. Her writing appears in Rock Salt Journal, Mockmom, and Parentco. Learn more at kerensart.wordpress.com.