So here it is, my chain rattling, an utter waste of my energy:

What I have? You don’t want this.

And you could get this.

And collectively, we could prevent this. We could treat this.

Collectively, we’ve decided to ignore this. That’s a story for another day.

My stepkid is going into her senior year in high school. She is utterly devoted to marching band. I haven’t seen her perform in three years. The first year, I was unable to walk. The second year, I was unable to sit upright.

And now here we are at the third year. Proper diagnoses in hand. Experimental treatments promising.

A mere 20-minute car ride to the field. One hundred feet to the chair my husband brought for me. One hour to remember what it feels like to be a part of society, almost giddy. Two minutes where she was right out in front of us and I was there for her to see in the audience.

Thirty-six hours later, and I can’t get out of bed. I have to cancel work commitments. Plans? No more plans. Goals? Not for now.

But I prepared. I rested. I drank my salt water. I took my meds. I ate whole foods.

At least now I have a whole sensical story (even if some large percentage of the country does not “believe” it). I got COVID in late 2023. I got Long COVID. Three years into the pandemic, there was still little awareness of what that was or how to treat it. So I was misdiagnosed for two years and it got way worse. For me, it progressed to myalgic encephalomyelitis (ME), and rendered me completely housebound, mostly bedbound and disabled. The Mayo Clinic gave me a 5 percent shot at recovery and I went home with some gabapentin and a prayer.

Pre-existing conditions exploded on my stage, pissed off they weren’t invited to the launch party. Ehlers-Danlos Syndrome (EDS). Postural Orthostatic Tachycardia Syndrome (POTS). Inappropriate Sinus Tachycardia (IST). Pinched nerves and scar tissue and a burning feeling that covers large portions of my skin. Each one, laying its specialized traps.

All together, keeping me in a dark room.

So, this sickroom? I turned it into a cave.

I imagined crystals growing on the walls. A fire burning palo santo. I imagined meeting an ancient hermit with a secret. I screamed and heard it echo back like a song. I whispered a secret hope and heard it amplified.

I pretended I was a monk and I was there to uncover the secrets deep within the mind. I imagined power collecting around stillness.

I formulated a whole contemplative class and yoga nidra experience around it. That’s what I can create, so I created. (It’s a humble offering.)

Let me rattle my chains for a few more sentences.

I was at the hospital getting an experimental treatment last week. The nurse asked if I needed to be sedated to have a needle put into my neck. I said no, unbothered. She remarked on how many people coming in for Long COVID/ME say that same thing.

“What we’ve been through makes a needle in the neck pretty insignificant,” I told her, strangely honestly.

“I cannot believe how many of you there are.” Pause. “How could I not have realized how many of you there are?” she mirrored my strange honesty.

“Because we’re gone.” I held her gaze.

We’re in our own separate caves, I thought.

Sweet reader, I’m not even asking for your advocacy, though that would be nice.

I’m asking that you continue to take COVID seriously, however much of an inconvenience or a bummer that might be.

Because you don’t want this. And I don’t want this for you.

And I know you don’t want to hear this. And I definitely didn’t want to write it.

Marley came back for Scrooge’s sake, not his own.

“To let go of does not mean to get rid of. To let go means to let be. When we let be with compassion, things come and go on their own.” —Jack Kornfield

Practice together live

“There are some mornings
When the sky looks like a road.
There are some dragons
Who were built to have and hold.”
—Joanna Newsom from “Clam, Crab, Cockle, Cowrie”

My dog Larry insists on sitting in the apartment parking lot, waiting. His sweet deaf ears perked up out of habit. His right paw lifted in anticipation. No one comes.

His people have scattered. He feels the uneasiness in his little bones.

My husband James and stepkid are off to New York City this week and Tokyo next. I love the dispatches of pictures. I love hearing the spaciousness in their voices that can only come from rearranged geography.

And me? Well, I’m . . . here. Where I have been for two and a half years. Homebound.

Like many with ME/CFS, my illness prevents me from traveling (for now 🤞). So I’m here in my cozy space, surrounded by my books and crafts and plants and a small dog who thinks he is a 12-pound furry deity.

And most of the time, that’s where I want to be. (As a child, I wrote a heartfelt letter to Bilbo Baggins urging him to stay in The Shire, no matter what Gandalf said . . . 😂)

Then I saw this picture of my husband.

I felt like I was next to him. The lift of the ascent in my belly. The full body expansion that can only come from lifting above the cloud line.

And, my friends, I had a rare case of FOMO.

In that moment, I realized I wasn’t just missing out on a series of events. I wasn’t just missing out on being in the photos and the core memories. I wasn’t just missing being the person I used to be.

I was missing how all those things combined into a felt sense of being free.

While it’s true that I have always been a somewhat reluctant traveler, it’s also true that I’ve truly enjoyed so many of my travels.

And while it’s true that I’m the best home body any body could be, it’s also true that I miss the world outside.

And I deeply, deeply, deeply miss the sea.

Deep breath.

But here is a truth I believe deep in my bones: If ME/CFS travel restrictions had to happen to someone, I’m glad they happened to me. If there could be a cosmic exchange, I would like to spare someone else.

I know, I know. I’m sounding like Tiny Tim. But I have a point.

I have always had the ability to create rich landscapes in my mind. I have a strange form of synesthesia—whenever I’m thinking or writing or reading, I am also walking somewhere. And each thought stream is a different place that I do not choose voluntarily.

When I learned to teach yoga nidrā, I started using this ability to create detailed journey meditations. But there’s something better than that.

If I could teach you one thing, friends, it would be this one: learn to travel to your Cave of the Heart. Want to learn? Read on.

The Cave of the Heart comes from yogic philosophy—it’s the landscape where the wisest, most resourced part of you is said to reside. It does not have to be a cave.

I could paint you a beautiful picture of a landscape. But it’s so much more powerful if you create one and then return to it, over and over, until the path is so well trodden you could walk it by just closing your eyes.

Convinced enough to try? Grab a journal and pen and let’s do it.

Cave of the Heart Mapping:

Once you feel like you’ve got a clear picture, get comfy and take ’er for a spin with this yoga nidra journey meditation.

Yoga Nidrā Session | The River:

I don’t want you ever to be stuck at home. I don’t want you ever to wake in the middle of the night with an existential fear. I don’t want you ever to have a day where you just feel unmoored.

But, if you do, I want you to know how to get to the Cave of the Heart.

(Larry’s dreaming beside me, paddling his paws in the air. I think he’s running through a wide open meadow in his Cave of the Heart.)

Practice with me live online

Note: This is a discussion of one of my many experiences with pain. It is not intended to glorify pain. It is not intended to reflect or instruct anyone else’s experience of pain.

Tiny spaces between the blinds were the only signs of the bright hot summer day. Lying in the darkened room, the (now familiar) pain ripped through me. Its claws slashed away at everything I felt so certain was me.

“Hard worker”? Try to work through this. “A good friend”? Try finding a single word to say to another human being that isn’t just some form of help.

Even my parasocial friends deserted me. Schitt’s Creek didn’t understand why I no longer eat meals with others. Parks and Rec wondered what happened to my binders of optimism. Even The Office knew that it was unlikely (5 percent, they say) that I’d ever be well enough to work at Dunder Mifflin again.

My eyes will no longer drag along the lines of my beloved books. My ears will no longer tolerate the sound of a podcast long enough to transfer it to my brain, which wouldn’t receive it anyway because it can only repeat the refrain: make this stop.

This was my second summer spending precious energy trying to command the roiling pain, armoring my shoulders against my neck, as if it were something trying to get in, rather than what it really was: something trying to get out.

Circle the part of the body that hurts, the form said benignly. I picture the people that calmly circle one foot. Or one shoulder.

I circle each part of the body, giving it its own bubble of pain. That feels more manageable than the boundary-less truth of the agonized ghost with chains, scraping and screaming through every cell.

One day, in defiance, I said out loud, alone, to the dark: Fuck it. Fuck it; bring it on.

I had a sense memory of being young at the shore of the ocean with an afternoon tropical thunderstorm gathering, and I would pretend I could command the sky. All that fearsome power in little hands.

I turned toward the windows and stopped resisting. I imagined a large void where the windows used to be. I spoke to it. Go for it. Make it hurt even more. I don’t care anymore.

Angry tears squeezed out of my sobbing body.

Wouldn’t it be magical if the pain went away at this point in the story? It was all some elaborate prank The Universe was playing on me to help me learn a valuable lesson in letting go. I waited for it.

The pain remained. The bracing eased. It was enough to free all the to-do lists I’d ever made, which then flew into the black.

Thousands of minutes of meditative practice, spread over
Thirteen years with wise people finding
Hundreds of ways to say: compassion
all emerged from the black hole, beautiful tiny winged creatures coalescing into the reminder of
One instruction: Stay.

Stay. Don’t push anything away. But don’t feed the storyline. Hold thoughts with soft focus. Don’t fight with them. Don’t believe them. They are brain excretions, not necessarily truths. Abide.

The pain remained. I walked the narrow bridge between pushing and pulling.

The pain remained. Hours passed by.

The pain remained. A chortle escaped in the dark.

It was me, wasn’t it, who had spent the last 20 years trying to learn the very thing I’m forced to reckon with now: No matter what I believe I’m owed, no matter what success I believe I can force into existence, no matter how much energy I insist I should be able to squeeze from my cells, reality stares back, unblinking.

It was me, wasn’t it, who sat atop a literal mountain multiple times to hear wise people speak on pain (inevitable) and suffering (how to make it worse)? A blue pen scribbling down wisdom I imagined would henceforth be captured in my very way of walking. Nodding frequently, trying to catch the eye of the teacher so that he could observe my diligent reception. Maybe he could see my very cells reorganizing into Wisdom.

That was me, wasn’t it?

The pain remained. A part of me skittered away from the realization. This cannot be what they meant. Not this pain, which has rendered me incapable of life.

A sudden memory comes, something I heard a teacher say once: The ground we fall on is the same ground we use to get up.

The pain remained. I imagined the void again. I imagined giving over to it anything that would slip through my fingers anyway, whether they were open or clenched.

The pain remained. I imagined throwing a lasso into the void, rescuing any action that I could reasonably take to help myself.

I will spend the rest of my life trying to describe the feeling that came then. The best I can do now is to say (blandly?) that it was a foundational peace. Not giddy. Not even necessarily pleasant.

The pain remained. I put my hands on the ground. The one I had fallen on. The one I could use to get back up.

The pain remained. The suffering eased.

Soon enough, the peace left my body the way it came—without asking for my permission. It tucked itself into a drawer in my mind.

What stayed was the memory of my hands, pressing into the ground.