Of mind and magnets, or what happens when the caregiver forgets her own care

A personal story from the Journal | Groundhog's Day 2024

You need to know this piece is long and more personal than I usually share. I never want my writing to seem only about me, so I went back and forth whether to hit publish. Then a certain person said, “You need to share your stories. Let others inside. Someone else is living a similar story they can’t tell. When you tell yours, they feel seen, maybe less alone.” Yes, and that matters. So grab your beverage of choice and settle into a comfy space.

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Until recently, I never thought about my cerebellum. Have you? I can talk about this now.

When, after weeks of waiting, the time for an MRI of my brain finally arrived, rather than stoic, I opted for comic.

Behind our truly humble, understaffed and backlogged, rural hospital, I wandered around in a parking lot, my gait off-kilter and a bit dizzy, the reason I was there.

I was whisper-calling, “Where are you MRI? Come out, come out wherever you are.” Ah, there, the radiology office, tucked in an outwardly funky, “temporary” building that was clearly dated, complete with a green sheen of algae at the edges from years of misty, coastal mornings.

Stepping through the glass door covered in a wrinkled sheet of grey tinting, I smiled at the only woman in the room, in scrubs behind a computer.

“Hello,” I said, “I’m here to have my head examined.”

She greeted me by name, answering, “Yes you are.” For a moment, it seemed like everyone in the world knew something about my brain, specifically my cerebellum, but me. What could they see in there?

I kept imaging nothing more than the usual jelly-like, walnut-ish looking textbook brain, only with bits of cat fur, downy feathers, a messy nest or two, and a couple of hamsters furiously running in wheels keeping the whole enterprise going.

I was smiling, dressed in fleece, though I felt naked on multiple levels. The pre-procedure instructions mandated an unadorned, organic-body, come-as-you-are affair.

Looking at my hand as I offered my insurance card, there was no simple wedding band or emerald engagement ring. My left ‘ring’ finger was clearly confused and fidgety after 30+ years of bearing those bits of gold and tiny stones. No snaps, zippers, or metal in my undergarments, so my ‘girls,’ shall we say, were unencumbered by underwire.

No skin cream or make-up, which I wear very little of anyway, so no lipstick and no eyebrows. I’m generally not vain, but without eyebrows (thank you, my dear eyebrow-eating autoimmune body), my face not only feels a little empty, it’s as if I’ve lost a form of communication—the eyebrows, like marionettes, dancing about excitedly when telling a story.

We speak with so many muscles in our faces. They work with or without words. Depending upon how you count them, there are 42 or 43 facial muscles involved in showing emotion. They create the physical expression of our metaphysical experience. Animal body and soulful energy at play.

Then even my fleece was stripped away, as I was handed the most enormous scrubs and told to put them on in a cold, white room. The drawstring pants and wrap-around top were big enough to hold several of me. I felt very small, way smaller than the fear I pretended I didn’t have, a little girl dressed up in someone else’s huge clothes on a strange afternoon adventure.

Thankfully, the outfit had been washed so much that the fabric was soft and light on my skin. Is this what it feels like to be a peach tucked away in a big paper bag, ripening?

My mind, trying to distract itself from a voice that kept saying, Hello, it’s really possible there is something horribly wrong with your brain, countered with a realization:

We’re always walking around naked. Every. Single. Moment. We just hide it under clothes. Also under words, as in ‘I’m okay,’ ‘No worries,’ ‘Fine, thank you.’

How this story began

Weeks earlier, in September, on the 11th of all things, I was in my doctor’s office going through some simple body movement tests. One had me touching my finger to my nose and then to her finger that she moved about. When her finger slid to my far left gaze, my finger did the oddest curlicue before it touched her fingertip. We repeated the exercise a few times. I didn’t control it, that curlicue, and thought it was rather cute.

“Dysmetria,” she said, which is not cute. “Also nystagmus,” she added, “your eye jumps about when you look left.”

“Really, I can’t feel it. I’ll have to ask my eye what that’s all about,” I offered.

She frowned, responding, “There seems to be something going on with your cerebellum.”

Who wouldn’t pause before asking, “like what?”

I’d been having bouts of balance issues, vertigo, wobbly steps, and transient dizziness for months. The spinning was kind of fun, if I just paused to let it be.

‘Letting be’ is the most underrated strategy for coping with life’s unwelcomed dramas. Some things are hard to accept, but you can let them be. Let be the reality of those things, as they sit with you, part of the story of you. Let be the strangeness and silence of what just is.

The spinning sensation was close to an out-of-body experience, but not quite. Actually, it was more like gravity trying to fling you out of your body but holding you back from flying at the same time. So, I may know what it’s like to be a bird on a leash, lofty and frustrated.

When she had me walk a line, heel-to-toe, mine was a drunkard’s gait without the drinking party.

I thought it was probably just the ear-crystal thing aka benign paroxysmal positional vertigo (BPPV). A big name for a common issue. It’s when calcium crystals, called canaliths, in one part of the ear spiral down into the ear canal and mess up the signals to the brain regarding your body’s position in space.

Online I’d found a video on how to do the Eppley Maneuver that’s supposed to put the crystals back where they belong. Thank you random YouTube people who put an incredulous amount of arcane information out into the world.

Yes, I did also watch a video of a baby goat jumping joyfully on a bed that made me feel better than the Eppley Maneuver, which didn’t work.

My physcian’s words bounced around in my mind for a moment. Cerebellum. Something going on with your cerebellum.

Then, after a pause of hoping the issue was just BPPV and mentally replaying that baby goat jumping on a bed, kicking up a colorful quilt, another thought: My brain must actually be doing quite well to have Eppley Maneuvers and baby goats and whole internal dialogues going on inside me while I’m swaying like a human pendulum and looking at you, my dear Dr. Connie.

I finally asked, “Like what?” What could be going on with my cerebellum?

All of this came after she decided I needed to be tested for a carcinoid tumor, concerns about a keratosis on my cheek and suspicious spots on my legs (which I think of lovingly as my giraffe calves), an overdue colon cancer screening, an updated bone scan to see if my osteopenia shifted to osteoporosis, and, of course, mammogram time.

She didn’t want to stress me with all the possibilities with my cerebellum, so answered, “probably just a small stroke.”

“So that’s your optimistic take?” I asked.

No answer, just moving on to what it would cost and how long it would likely take to get a brain MRI without leaving our rural redwoods (where veterinary care can sometimes trump human care) and going down to the Bay Area. As a caregiver, I knew I wouldn’t risk a the 6-hour drive and overnight trip to the metro. Still I heard a twinge of skepticism in her voice.

“You do trust an MRI locally, right?” I asked. “We’re not talking a magnet and a flashlight on a string, followed by results scribbled on a napkin, right?” I asked.

Finally, she smiled. “Local is okay, it’s just getting you in sooner rather than later.”

Reality and the inner tribe

Taking it all in stride as I made my co-pay, I joked a bit with the receptionist, because it makes me happy to make others laugh.

I flung my purse, hand-painted with a colorful though worn dragonfly, over my shoulder, got in my old green Prius, and started driving. Always much to do, and needed to get back to my husband, alone at home.

As I worked through my list of to-dos—pick up fire starters to ignite the still-green firewood, groceries and a florescent bulb for the kitchen, my husband’s prescription—I simply began crying. Hard.

When I couldn’t see well, I pulled over.

In the cocoon of my car as others whooshed by, I calmly offered out loud, “God, Universe, Einstein’s notion of an unseen intelligence permeating everything, I can’t really be ill right now. There can’t be two sick people in the same household. Seriously, this can’t happen, okay?”

I don’t cuss much, but the mind has many voices. I heard, What the f***? Followed randomly by, Dysmetria and Nystagmus, what great names for a pair of blasé cats, if I get some in the future.

Pulling out my iPhone, I Googled cerebellum to see where that neighborhood resided in the landscape of my brain. In Latin, it means ‘little brain,’ so the little brain at the back of the big brain. The ‘bellum made me think, war, as in antebellum.

Is my brain at war with itself? I’m already dealing for four autoimmune ‘gifts.’ No, the etymology is not cere-bellum, but cereb (brain) and ellum (pure and clean).

I read what things that can go wrong with your cerebellum: strokes, neurological conditions like ALS, autoimmune issues like MS, benign tumors, cancer, infections, degeneration. Yikes, who invited them?

Another voice offered, Hey, you’re not that lucky. When was the last time you were the rare winner of anything? So why would you have some weird issue with your little, pure and clean, brain?

Ah, but the mind is a tribe, and there’s always the smart-assed one: Yes, but when it comes to health, the older you are, the luckier you get, and you could be the winner of a small stroke, or if really ‘lucky,’ some exotic tumor.

My doctor’s voice echoed within, “There seems to be something going on with your cerebellum.”

Maybe. Maybe not.

As tears dried up, cheeks hot and stinging, my little brain just decided: We’re only ruling out. There’s nothing in there but poet music and pretend hamsters.

Back on the road, hushing the inner debate, I let only one question rattle around inside, the question that defines the human experience.

How do we live, knowing we will die?

You answer it moment by moment.

In that moment, it was a simple decision to assume all is well until there’s proof all is not, then let the mind convince the emotions and the body to get on board.

You keep going.

You try to remember to look up often from the to-do list and to rise up out of the torrent of thoughts, so you don’t miss how sunlight through trees makes a shadowy lace, lovely and billowing, on the pavement as you drive.

Time for the MRI, or when machine and mind look inside at the same time

It was late October when the MRI guy, a seasoned tech we’ll call Ralph, led me back out the grey-tinted door of the radiology office and across another stretch of parking lot. My humongous hospital garb wadded around my wobbly body offered little protection from the chilly air.

No drama of fall colors in this redwood region, though as Ralph guided me toward what appeared to be an oversized trailer, there was a single flash of orange—one nasturtium, growing out of a crack in the pavement. Persistent. Defiant. Dazzling above the blacktop.

Is it only me, or doesn’t it seem that the universe gives you what you need just when you need it most?

As I stepped up into the trailer where the MRI equipment lived, watching my feet so I wouldn’t stumble, I said, “I used to live in a trailer as a kid, but it didn’t have an MRI in it.”

Who doesn’t say odd things in odd situations?

I’d been told the procedure could take 20-40 minutes, and that the machine can be claustrophobic for some and super noisy for all. So, I’d already decided that I would just keep my eyes closed and focus my mind on a visualization practice, or what I call, inner travel, free of time and boundaries, beyond logic and limits.

Lying down, gliding inside the big yet internally cramped tube, my first thought was, mummy, the tube very tomb-like. Then came, marrow, I was the living center of the massive, hollow-boned MRI.

As it started grumbling and grinding, then making wildly loud and random clanking noises, I wondered, Is this what it feels like to be a carburetor, the mechanic with wrenches and widgets, trying to figure out what’s wrong with you?

Quickly shifting gears, I led my mind along a lush, forested pathway full of bird chatter, chickadees and dark-eyed juncos. Leaves trembled with the flutter of wings and shiny beaks as I headed toward the growing volume of a waterfall, then into a pool of water, swimming deep, and through some subterranean series of tunnels.

I didn’t need to breathe, only to keep swimming.

Ultimately, I popped up in another body of water in an immense white world. I stepped out onto a mossy bank, still wearing my cinched up wad of hospital gown and trousers, dripping profusely. I laughed, I don’t have to wear this outfit here, then shook my body until I was in a simple dress, a pinafore with whorls of lavender flowers, something like my mother made for me as a kid.

It was a bright place, endlessly lit all around and above me. As I looked down at my bare feet, wiggling my toes in the cool filigree of moss, I could see that the ground and the lake I’d just emerged from were suspended in the light, which radiated out below it all.

Before I knew it, I was climbing up a steep, rocky trail to a ridge, where I sat, dangling my feet over the edge, high, high above the lake, feeling sunny-warm, my hair blown not by breeze but by the light itself.

Every so often, I could hear a clank and a bang, somewhere far off, but it was muted by the light holding me.

I sensed other beings in the light, formless yet connected to each other as if holding hands, encircling me, an energy dancing clockwise around me.

A line from a favorite David Wagoner poem, “Lost,” whispered itself, “Wherever you are is called Here, And you must treat it as a powerful stranger.”

I felt safe and peaceful, after feeling so lost recently. I felt outside of ordinary chores and demands and worries. I felt safe, and oddly, seen.

Yes, tucked away in a machine as a magnet rooted about in my brain, I felt seen, not by that mechanical beast encasing me, but by that light and whatever or whoever was within it.

Suddenly, surprise, sitting beside me on the ridge, was my sister’s deceased husband. He was healthy and smiling and wearing one of his huge, unusual watches, a see-through gizmo with gears instead of hands.

I hadn’t known him well, though he was quite the storyteller. A handyman with a love of history.

He had no stories for me. We didn’t talk. Though it was as if we knew everything about each other right down to our soul-filled bones.

Have you ever sat beside someone and felt so in sync that words were unnecessary and inadequate—both of you knowing you’re having the same, meaningful experience? It was like that.

He seemed to want me to know that whatever happens, we all end up okay. Whatever happens, whether the mind tags it good or bad, we all end up okay, and somehow his presence in that light proved it.

Then he was gone.

For a while, I whirled up, joining the cycling energy, then I felt an inner energy swirling and spiraling, counter-clockwise. My Kundalini?

Looking down, I had not a purple amethyst, my birthstone, but a green amethyst, projecting light out of my heart-space, the tips of my fingers, and the crown of my head. Beaming out green light, I sensed I needed to protect it, to be careful with it, to not give away so much that the stone would grow cold and dim.

But the light wasn’t mine nor in my control, it just came through me.

I stepped out of the cycling energy, floating still in the center. There was something cupped in my hands, a red pear, so I offered to share it with a person who appeared beside me.

Then many people stepped out of the light. I was worried that I didn’t have enough pear to share, when I discovered a basket of pears at my feet. No matter how many I gave away, I still had more to give. I had red pears for everyone.

I thought, This is what it means to be blessed, to feel grateful that you always have more to give.

In a flash, I was sitting again on the ridge, feet dangling into lit nothingness, noticing a tiny tuft of bright, chartreuse moss caught on a big toe and an arc of mud under the nail.

Ah, I’m earth and light.

The energy beings, or whatever that experience may have been, were gone. I felt pulled to go back, down into the lake, through the deep watery channels, returning to that other pond, the ever-falling waterfall, and the wooded path.

To be Here, is always to be coming home. That was the sound of my voice, the one I can trust, within.

As I re-entered the forest, the big trees arching over me, the poem whispered its lines again, “Stand still. The trees ahead and bushes beside you are not lost . . . Stand still. The forest knows Where you are. You must let it find you.”

So I stood in the embrace of branches and birds, still and whole, wanting to be found and also to stay in such a beautiful moment.

Pinafore gone, swaddled again in the clot of hospital clothing, it didn’t matter. I was okay, in that moment. Okay. I just soaked in the trees and the okay-ness, without realizing how quiet it had all become.

“You’re done,” Ralph said, sending me gliding out of the tube on its magic tray, as if a scrawny, pink-rare roast.

From MRI holiday back to the real world

The MRI process lasted 18 minutes according to Ralph, but it seemed like only 2 or 3—funny how the mind can warp time.

He didn’t escort me from the MRI trailer back to the radiology office, though I was more dizzy and off-kilter than ever, which I later read can be a brief side effect of an MRI.

I felt feather-light, as if with each crooked step, I was floating just millimeters above the earth. Walking required intention, recalling the mechanics of how a foot works.

Stunningly, there was an inexplicable joy, a deep-relaxed calm, a kind of high, as if I’d left my body and wasn’t ready to slip back into the world of flesh and pulse, gravity and ground.

When I swung open the door, there was an elder Latino waiting his turn. I felt so connected to him, a kindred spirit, wearing the same enormous hospital outfit and the same half-smile I’d had 20 minutes earlier that says, I’m doing my best to be fearless.

In his case, he wasn’t alone, but flanked by two doting women whispering in Spanish, and a little girl (his granddaughter?) squatting at his feet, looking at something clearly fascinating on the floor, invisible to me.

As I passed by, she looked up, her mouth dropping open, then she grabbed her abuelito’s calf. I imagined my eyebrow-less face, and wondered what I was expressing to her. The women stopped talking.

I thought, ¡Buena suerte!, ¡Con dios!

Where did that come from? Meaning essentially, Godspeed. Ironically he nodded, as if he understood my mind and heart, as if to convey, “same to you.”

After relinquishing my MRI attire for my own fleecy-cozy clothes, I careened back to my car, marveling at how the low angle of autumn sunlight could find me, small-swaying me, rays cast by a star 93 million miles away.

Thank you, Sun, I see you, too.

Ecstasy isn’t quite the right word, but what I felt was close to that. Whatever my eyes landed upon, seemed luminous, surreal. Everything pulsed with energy, a kind of aura, so alive in a palpable way.

Even my Prius waited for me more like an old friend, a being, rather than a collection of metal, plastics, and computers.

Google later would tell me that strange exuberance was another, albeit less common, side effect of an MRI.

Maybe. Maybe not. As any of my clients will tell you, I often say, “Awful Mind, Awesome Mind.”

Why? Because our minds can torment us and delight us, lead us into illness and all the way to the moon, then beyond.

You can’t fully control the wild horse that is your mind, but you have way more ability than you may realize to take the reins and guide it toward light, beauty, joy, possibility, love, whatever it is you need to live, really live while you are here.

This will probably sound bad, but I sat in the car, for I don’t know how long, enjoying the mind-plus-magnet high, not wanting to go home.

Home, my physical home is lovely, set among redwoods and wildlife and kind neighbors. However, my felt home, the home happening inside, holds the active process of losing. The person waiting there is someone I love deeply, yet also not the person who used to be there.

I know real loss, and this active losing seems harder. Is it so bad to want a little post-MRI holiday from that?

Author James Clear talks about getting 1% better each day. But what do you do when the person you love drifts 1% farther away from you each day? You try not to calculate at what point there’s so little left that you’ve both crossed that threshold from 1% into nothingness.

That September day, leaving Dr. Connie’s office, I debated whether to tell my husband about the dysmetria and nystagmus, all the tests to be done, including an MRI of my brain. It would mean upsetting him terribly in the moment, only to have him forget it all within a few days.

Memory for him now is a lot like writing a poem in sand at the edge of the sea, only to have a salty surge flow in and smooth it away, as if the words and whatever emotion they inspired were never there.

Yes, I did tell him that day, not because I wanted to, but because 30+ years of knowing each other, loving each other through adventures and heartaches, well, he just sensed something was wrong. And yes, he did forget it all not much later, until MRI day arrived, when I told him I’d be back in a couple of hours.

So, in my car, the MRI behind me, I tilted the driver’s seat back, closed my eyes, and released myself to the dizzy-spinning sensation.

It took me back to a sunset in Davis, California, decades ago, standing with the owl biologist who would later become my husband, at the edge of a crop field. He puckered his lips, not to kiss me, but to mimic the squeak of a field mouse.

Suddenly, out of the dusky, periwinkle light, a Barn owl appeared with its heart-shaped face bright in the deepening dimness. Pure silence, it hovered just above us, its under-wings white and pumping softly, no doubt confused to find humans instead of mice.

My owl man, as I later came to call him, wordlessly took my hand in his, and we were awe-struck together. When I blinked, the owl was gone, evaporated into the night. It was just us and the sounds of crickets in the crop stubble.

As I relived that moment in our lives, I could feel the warmth of his palm against mine, and the very magic of this man, pulling not a rabbit out of a hat, but an owl out of the night.

He’s still here, just a different kind of magic. Then, I wanted to go home, to touch his hand, to bathe in this gratitude as long as possible.

Still enjoying how miraculous the world seemed, my body feeling lofty, I pulled down the seat belt, securing me back into car and daily life, and I pushed the start button.

How do we live, knowing we will die? You just keep pressing that start button.

FYI: Every moment has a start button.

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In case you’re wondering … Later that night, I checked for MRI results in the patient portal, a lot. Just before bedtime, they appeared.

My brain, my cerebellum, my little brain, was indeed pure and clean. Whatever issues I was having was not something going on with my cerebellum.

Eventually we ruled out all the dire possibilities. No clear diagnosis other than this from Dr. Connie: “Caregiver stress, strain, and a serious lack of self-care. Caregiving isn’t a sprint, it’s a marathon, and you’ve got to take care of you.”

I felt so dumb, as in, Really, that’s it? Followed by self-blame and chiding from that inner tribe. But none of these thoughts and feelings even came close to the depth of exhaustion marking each day.

So, on this Groundhog’s Day, early in the gift of yet another new year, the day on which my mother howled me into existence, and feeling more balanced, I’m owning the diagnosis. As a member of the groundhog clan, I vow to be more marmot-y—a bit more rest and good food and wandering out of my burrow to explore and letting it be okay to be a furry mess sometimes.