Something greater: a pilgrimage
One week before checking into NIH's Epilepsy Monitoring Unit, I check into someplace very different.
Exactly one week before checking into the Epilepsy Clinic at National Institutes for Health (NIH) for a 14-day brain study, I take a much-needed pilgrimage.
Lambert Cabin, owned and maintained by Potomac Appalachian Trail Club (PATC), is a rustic log home nestled into a hollow just west of Shenandoah National Park. A rocky, barely maintained road cuts between an old stone wall and a dry stream bed, separating Lambert and a couple other cabins from civilization. Cell phone coverage and internet remain a few miles back towards town.
Lambert is the last cabin before the road ceases to be a road, and becomes a trail. A small sign shows us where to park. We leave Chris’s 4Runner and walk towards the green standing-seam metal roof that glimmers through some trees.
A few steps from the parking area, a stunning clearing opens up before us. The forest canopy towers over layers of underbrush teeming with life: birds, rustling leaves, insects…and judging by my service dog’s cocked ears, a lot else besides. I’m sure I’ve stepped into a fairytale. As I unlock the padlocked front door, a colorful butterfly lands on the stone step. Its pulsating wings seem to beat out a message in Morse code: “welcome to our hollow! Everything is lovely here!”
Everything is lovely. The September day is breezy, and the temperature hovers right between warm and chilly. Clouds come and go. It doesn’t rain, but it did yesterday. The tree bark is still dark with moisture. The forest foliage is lush and bouncy.
We unpack the 4Runner, and Chris returns to our farmhouse in town. It’s Monday, and he has to telework from his home office. He’ll be a mere 15 minutes away for the next few hours, but operating in a different lifetime. He’ll return later to dine on a simple meal, stoke a wood fire in the stove, and snooze in our sleeping bags on top of an ancient mattress.
While he's gone, I make my peace.
This is the thing I come back to, again and again, to heal from whatever ails me: I go into nature and drink in the forest (or the beach, or the desert—I’ve tried it wherever I’ve lived and traveled, and it works in any terrain). What I seek is not adventure or an adrenaline rush, but simplicity. Here, at Lambert, Nosie and I are just two mammals in the woods. I thrive in the lack of beeps and buzzes. I have a few modern conveniences, to the extent that they help keep things simple. An antiepileptic drug here, a satellite rescue device there. I’d prefer a modern toilet, too…I rented Lambert because it was advertised as having one. The cabin log book and a sign on the seat inform me that it’s been out of order for weeks. So I’m left to face the privy, home to dozens of spiders that are the closest in size to Mojave tarantulas as any arachnids I’ve seen on the East Coast. After one falls off the ceiling onto my head with a thud, I opt to squat outdoors with Nosie.
A two-mile path leads uphill from Lambert to the Appalachian Trail, which hugs Skyline Drive along a nearby ridge. Tomorrow, Tuesday, is my designated hiking day. I haven’t been sleeping well, and I’m afraid I won’t make it far on foot. I also know I will try with everything I have. I’ve been training for this since surviving sudden cardiac arrest in February. In cardiac rehabilitation, I named hiking as my biggest goal for recovery. Nosie and I were avid hikers before I caught COVID and everything started unravelling. I had dreams of tackling the 250-mile Tuscarora. Nosie and I managed a treacherous trek in Dolly Sods Wilderness last October. Now, at some point almost each day, moving around my own house is a challenge. Speech fails me for a few moments at a time. Convulsive partial seizures cluster together at key points throughout my 26-day menstrual cycle, although not quite predictably enough that I can build a solid life or job around them.
Meanwhile, through it all, there is one thing I’m still growing and building: pure, mammalian stamina.
Chris has taken me hiking almost every week since my cardiac arrest. At first, I couldn’t walk a flat mile. During cardiac rehabilitation, I focused on machines that built leg muscles. Progress was painful, slow, and seemed to cause extra convulsions. I still can’t go uphill very well because my heart doesn’t pump enough blood to my legs. Biking (and time) have helped rebuild some muscle.
Recently, I completed my first solo hike with Nosie since last winter. Chris dropped us off at a nearby overlook on Skyline Drive and we hiked down past Mary’s Rock. Nosie’s training was a huge source of comfort on the trail. I’ve trained him to respond to both voice and hand commands. He jumps under my head to protect me if I fall. His velcro nature means he’ll stay glued to my side if I’m temporarily immobilized or unconscious. And the patches on his pack alert passing humans that I have epilepsy. A bright pouch carries my rescue drugs and instructions about how to help in an emergency. But none of that was necessary this time. Chris picked us up just outside the entrance to the park after we successfully traversed five miles downhill. I felt great for a couple of hours. Then I paid for my exertion over the next few days.
The exhaustion was worth it. I’m hiking for dear life. What if I don’t like the news I get from NIH doctors this month? What if the movement disorder I face is degenerative, and there will come a time when I can’t hike at all? So I resolve, as often and for as long as possible, to walk in nature.
To prepare for our second solo hike, I spend Monday afternoon doing some light Ashtanga yoga in the clearing outside Lambert Cabin. I play music from a portable speaker to warn animals of our presence. There is nothing to distract me from the relentless parade of moment-to-moment thoughts and decisions in my head (is it worth sending Chris a satellite message to bring the chocolate chip cookies from the freezer?…I think I have one more sun salutation in me…wow, my left leg is really tight from last night’s seizure…I’m definitely messaging Chris about the cookies later…this lunge feels amazing, I’ll stay here a moment longer…when should I start dinner?) In between thoughts, space opens up so I can notice the simplicity of being. This space is easier to access when none of my apps send notifications, and when nobody emails or texts. In the clearing, I am only interrupted by things that draw me back towards being, not away from it: a passing bee, an interesting cloud. Nosie’s contentment as he runs in circles with a big stick. For a second here or there, a beam of sunlight streams through the clouds and there is nothing but warmth on my skin. For a second here or there, I brush actual, deep satisfaction.
During one of my down dogs in the grassy clearing, I recall how I couldn’t do a down dog for a few months after my S-ICD surgery. I remember the first time I played a yoga video in March, and how I wept with jealousy to see the instructor pop into that familiar pose with such ease. I missed moving so badly. My body was a million miles from being able to stretch like that. I felt infinitely broken. For months, I moved my right arm twice as far as the left and did most poses seated. I made the accommodations I needed to make, and it was disappointing. But I did practice yoga. It’s like hiking downhill with a decked-out seizure dog. You do what you can. And every now and then, right before you give up, sunlight breaks from behind the clouds and heats up your heart to remind you that there's still room for hope.
When I return to town (and email and cell service) on Wednesday, I know there will be medical bills to pay, errands to run, and packing for my trip to NIH’s Bethesda campus. There will be a brain MRI in Winchester. I’m not so naive that I think this break from my anxieties will follow me out of the woods. But what I feel here in the woods is also real. Perhaps more real than any of my other emotions. I take a lot of pictures to help me remember this forest clearing while I’m in the hospital. Each time I pat Nosie, I’m aware that in a few days, he’ll wonder where I am and why I’m not home yet. If human heart cells have memory, maybe his body and bones store these moments somehow. I hope he’ll be able to call upon them when his dog brain doesn’t know what to make of our temporary estrangement. Since I can’t talk to Nosie about what’s happening, I hike and snuggle with him about it.
As I start dinner (a sheet pan of roast chicken thighs and assorted veggies), I sit down to draft this post. Nosie drifts from window to window, always on the alert for things I can’t see in the surrounding trees and bushes. Smelling what I can’t smell and and hearing what I can’t hear. His active attention reminds me how much is out there. I’m tiny, in the scheme of it. That’s what I love about being in the silent, noisy woods. It forces me to remember that I’m not just one life—I’m part of a vast web of life.
Suddenly, out of the silence, an insight: I am part of something greater. My shoulders relax. The nameless presence that surrounds me in the historic cabin, and in the faint rustling of the leaves in the clearing today, makes itself known. It’s the same thing I see reflected in my dog’s amber eyes as he points at unseen mysteries in the bushes and then turns back to gaze at me.
You are part of something greater, the presence affirms. A load of bricks tumbles from my back. Then I notice that the kitchen is starting to smell like cumin and browning chicken skin. I get up to check on the sheet pan, my steps lighter.
On Tuesday, I pack my Zoleo satellite phone, emergency seizure drugs, water, food, and bear spray into our packs. Nosie and I set out into the park. I expect to have a few good hours like I do most mornings, and am prepared to rest for days afterwards. I’ll be indoors, feet up, while NIH pokes around in my brain, so I afford myself this luxury and this risk. On Tuesday, I want to be my full self, alone with Nosie and Mother Nature. Alone with the humming silence. Humbly praying for a safe and peaceful passage. Two mammals in the woods, making our pilgrimage.
I hold Monday’s insight close as I walk uphill for the first time in months—all 3.5 miles to Stony Man Overlook. I hold it close while Nosie and I pass several piles of fresh bear scat on the way back down to Lambert. I am part of something greater, and Nature is in charge, taking me further than I ever imagined I could go. I hold this insight close as I pass through a tiny, seven-mile slice of backcountry without tripping once. My gait doesn’t betray me. I am able to speak to Nosie the whole time.
I hold this insight close and resolve to take it with me to the science experiments in Bethesda. The brain study I’m undergoing may or may not help me, but the data I contribute will certainly help researchers, other cardiac arrest survivors, and other people with epilepsy. My own experience is real and important. It’s also not the full story.
The something greater is what really matters.
Oh I see, this isn't that big a deal. I mean, it is, but for a participant, it's not a clinical drug trial or some serious intervention. It looks like adding yourself to a database-kinda deal. Very important, very worth a person's time. Yet comes with all the mustering courage for an EMU admit for certain. In your case, terrifying.
Do you have a pacemaker? Or what's the plan there?
I am so glad you were able to hike before the NIH stint. Your writing is so beautiful, Lauren! Thank you for sharing such personal posts. Sending lots of love and positivity to you.