Friends,

Let me preface this post by saying, anything that sounds like an ad is just me being a nerd and wanting to write something lighter this month. I do get philosophical towards the end, as one does. With that, let’s get into it.

Some of you might remember that I’m a big fan of a self-care app called Finch.

This week, I hit 600 days on Finch. 600 days! That’s an impressively long time to stick with anything, let alone anything related to self care. Giving myself a much-deserved pat on the back for that one.

What can I say, Finch makes it fun. And they’ve tapped into an interesting piece of human behavior — people who struggle to take care of themselves often have an easier time taking care of others. Especially when the recipient of said care is cute. (The Mandalorian and Grogu, anyone?)

Some of us may have neglected our tamagotchis, tucked the beloved Furby away in the closet when it got weird, and invited entire families of Sims into the pool before removing the ladder, but we’re adults now. We’ve matured. (Hopefully others tested the bounds of morality while playing The Sims in the year 2000, and aren’t deeply disturbed by that one).

As I was saying, it’s been 600 days with my lil birb, Phoenix. Their gender has changed several times, and the Finch universe is wonderfully freeing and inclusive on that front, along with disabilities. I like to give Phoenix a cane to let friends on the app know I’m not feeling so hot that day. Or, just because it looks snazzy.

Completing my daily goals gives Phoenix energy to go on adventures, and then they come back home and rest before giving me the recap. I’m currently living vicariously through my birb in Dubrovnik, aka King’s Landing in Game of Thrones. I also get coins for every goal I complete and, unlike real life these days, I get to use them to buy Phoenix whimsical clothes, furniture, and decor. Their birbhouse is the place to be.

If this all sounds like a glorified to-do list, it’s not. Well, it is, but with bribery? And the goals are meant to be basic and build you up. The two founders quit their corporate jobs to create the app after struggling with their mental health and burnout, and you really do feel it throughout the experience. Not to mention, it’s free!

Some of my goals include:

Literally survive the day. Finch suggested this one, and it’s my personal favorite. Whether the day was filled with fatigue or health anxiety, awful or joyful, I made it through, and that’s never nothing.

Get out of bed. Because this one’s not always guaranteed, and at this point, we all deserve an award for getting up in the morning.

Brush teeth. No shame when I’m not feeling up for it, but it’s a nice reminder when I am. Flare days aside, there’s the ol’ depression and demand avoidance, so I always welcome a little extra motivation.

Think a nice thing about myself. I try not to force this one, but it’s nice to look back on the day and remember the moment I thought “I look pretty, considering!” or was happy with something I wrote or did. It’s about celebrating the fact that it happened, rather than pushing myself to feel something I’m not.

Do one thing that makes me happy. Ideally I’m doing more than one. thing. that makes me happy, but there are days I’m not up for it, or left searching. Some of my defaults are: putting my feet in the grass; cuddling Carlos 🐈‍⬛; hugging Dave; painting or drawing; eating something sweet; or riding passenger princess with my compression-socked feet on the dashboard.

Noah Kahan’s The Great Divide is my favorite car song at the moment, in case anyone was wondering — though Dave thinks it’s funny to ask, “who’s Rich?!” and I can’t unhear it, and now you can’t either. I’m so sorry, but we’re in this together.

Read 5 pages of a book. This was a goal I set while attempting to expand my capacity, and I would like to revisit bringing a physical book outside and moseying my way through a few pages. For now, I check it off every time I listen to an audiobook. After all, that also qualifies as not-scrolling.

And finally, the point of this post (if there even is a point) —

Tell myself I love you - oh boy, this goal was hard when I first set it. I was still “fakin’ it to make it,” that is, practicing self-compassion as a means to heal. It didn’t help that I gave myself the black diamond of tasks: looking at myself in the mirror while I said it. (!) Like, give a girl some runway before asking her to takeoff?

Now, I just do what’s comfortable for me, which is closing my eyes, putting my hand on my heart, and sending myself whatever love I can muster. Sometimes I tell myself “I love you.” Sometimes I accompany it with phrases like “this isn’t your fault,” or “you’re doing the best you can.”

I don’t know, maybe try it and see how you feel? It’s.. different from most people’s internal dialogue, speaking from decades of self-criticism and shame. If I can do it, you probably can too!

After saving this post to my drafts folder (aka the Sims swimming pool for writing), I caught the end of a Live featuring and . Amber demonstrated a breathing practice of hers, in which she “brings love into her heart” on the in breath, and “imagines love falling over her like rain” on the out breath.

I haven’t told Amber this (yet — hi Amber!) but I think a lot of her power is in her spoken voice. There’s this steadfast quality to it, and her, that I just trust, and have always trusted. And it felt quite synchronous in the moment! We’re really all out here living these parallel lives, and slowly finding our people, and I think that’s beautiful.

I’d love to hear a goal of yours, on or off Finch. The more random or unhinged the better! I want to hear that you’ve made a goal to pet a turtle daily. I’d also love to know if you’ve completely self-actualized (or effed all the way off) and have zero goals. Bravo.

Speaking of which, I came across an excellent Note from recently, and one part called out to me, in particular. He says:

If your peace requires perfect conditions, it’s 👏 not 👏 peace 👏

It took me back to 2024, when I was discovering all the tools that could bring me peace and heal my chronic illness, ideally in 6 months time. Meditation, medication, art therapy, journaling, gratitudes, grounding in the earth.. When these things work, it’s exciting, you want to tell everyone, and then you realize everyone’s different and there is no one-size-fits all approach. So I quieted down somewhat (let’s be honest) and went inward. Then came the stage in which I could find true peace in myself, with or without chronic illness.

I stand by my self-care tools, and yet, now I wonder if what made them special was me trusting and loving myself enough to do them.

The tools are still available for tougher days, but I don’t need particular habits to feel calm anymore. Heck, I don’t even have to always be calm. I just need to be me.

As Nick, the author of the note above, replied to me —

There comes a point when peace is no longer something we create. It becomes something we stop interrupting. We don’t always need to be calm. Sometimes peace is simply allowing this moment to be exactly as it is 🙏🏼

Pieces that stopped me in my tracks —

There were a lot of them this month. I’ve been in a flare, so please forgive me if I waxed poetic about your post and forgot it here. All your words are so special to me.

The Tools That Fit by . Here, Fred’s written about Full Self-Driving (FSD for short) and the Visible wearable, two tools that help him manage his LC/ME. His writing is measured, informative, and highly relatable for anyone living with these conditions. While I was already a big fan of Visible, he opened my mind to potentially gaining more independence in the future, which gave me hope when I needed it.

Uno Reverse: From Healthy Kid to Fragile Adult by Audrey over at . I’ve never felt so seen and healed by a post, I lol-ed multiple times, and the girl has gifted us with audio. The big three! Get over there.

It felt like these two pieces gave me permission to tap into something different with my writing this month. So, if you hated this post, feel free to blame them. Just kidding, they’re both awesome and I hope everyone reads them already, and if not, you know where to start.

And a glimmer ✨

I’d been getting walloped with grief about our angel dog, George, so Dave and I stopped in at the local cat cafe to support and make some friends. I follow the felines on Facebook and even sponsored one for the month of June, partly to stop myself from adopting a whole new animal when that’s not within our means right now. Our visit did not disappoint. After some casual hangs and a lot of pspsp, the owner brought out little dixie cups of chicken, and suddenly we were surrounded. Kittens and seniors, alpha cats and shy guys, all ours for the moment. On the way home, I gleefully checked off my goal to “do one thing that makes me happy.”

Thank you, as always, for being here,
Lisa

Friends,

May was a rollercoaster in this house.

Coming off a trip upstate the last week of April, I had a string of great days and even wondered if this was it. Was I…getting better?

I spiritually released a job I’d interviewed with a month before, and then got the call from them an hour later. I shared my references, along with my Long COVID diagnosis and a few very reasonable needs: one less day in the office to start, a quiet place to break midday, and a weekly 1-hour acupuncture appointment on Fridays. These were disregarded. I was given the option of pushing back my start date to allow me to “fully recover.”

It’s a tough pill when you know you can exceed expectations with accommodations, and it’s just not enough. Risk avoidance is “nothing personal” for a company, but it’s very personal for those of us being avoided. And to be clear, when I say avoided, I mean discriminated against.

I wrote the following poem to process (1) how unfair it felt to have to choose between the job and my health, and (2) the realization that this is something I’ve always felt I had to do, likely leading me to where I am today.

The divide

I’m in a “good” place
but not “good enough”
to get to the place
“everyone else” seems to be.
People are glowing
for me.
I want to please;
I want to keep up;
I want to be good enough
for them.
I want to make up
the difference.
I want to cross the divide.
I know I can do it —
but at what cost
to me?

I felt then that it was never my fault, that I was always only doing the best I could. I let myself feel the grief, and withdrew my job application.

There was also Mother’s Day and birthday celebrations for my brother and dad, followed immediately by World ME Day — which is how we raise awareness, yet can also feel like the ghost of Christmas past and future all in one? Needless to say, I tipped over the edge. From then on, I’ve been fatigued more often than I’ve felt well.

My levels of fatigue have ranged from an aching head, internal tremors, and shortness of breath, to being couch bound for days at a time, to a full day unconscious in bed.

Rather than pushing away my reality, I decided to get closer to it, to write down notes about my fatigue. Here’s what I’ve got: 

Fatigue is hearing a strange noise and literally not caring if there is an intruder.

Fatigue is feeling drunk from too much activity and hung over from zero alcohol.

Fatigue is sitting down to rest between the couch and the bathroom.

Fatigue is being too depleted to process the grief of your life slowly disappearing.

Fatigue is attempting to hold onto hope and ease while managing pain in the dark.

Fatigue is like quicksand, in that the harder you fight, the deeper you sink.

Fatigue is the body’s way of alerting us that there are zero reserves in the tank.

Fatigue is like an unwelcome guest that invites themselves in for tea — for days, weeks, months, years at a time — all the while demanding to be listened to, supported, and against all odds, loved.

These days, I feel like a boat springing holes without knowing the cause. Realizing I have less control than I thought, and making peace with that. Sinking into the abyss.

There’s a German phrase, that means “I am feeling visited enough” —

“Ich fühle mich jetzt genug besucht.”

Lately, I’m feeling “visited enough” by fatigue. For years, I needed it to teach me something — now, I don’t. I’ve learned the lessons, released the trauma, and felt the emotions. All I can and want to do at this point is take care of myself and hope the fatigue eventually moves on.

After a day in bed, I rest my eyes under a damp washcloth and drift back towards sleep. Dave breathes in light, rhythmic snores beside me. The air conditioner provides a constant din of white noise. These words keep coming to me, uninterested in the hour and my sleep schedule. But otherwise, my mind is empty. I lay on my left side with my arms crossed at the chest, almost hugging myself, with a thin pillow between my knees. I tip into the quiet place inside myself, and find nothing to process. No anxieties or fears, no complaints, no sadness.

Just the vast expanse of endings and beginnings.

Pieces that stopped me in my tracks — 

Camouflaged

“High-Functioning” AuDHD - When the Outside Shines and the Inside Is Burning

“You always seem so full of energy…

Read more

5 months ago · 732 likes · 83 comments · Camouflaged

As I noted when I restacked this one, it’s the most clear, comprehensive, and digestible post I’ve ever read on high masking AuDHD + burnout. It described my experience to a T.

Neuro Love Notes

Masking made me sick. Unmasking cost me my job.

I’ve been sneaky-quick-drying my eyes and walking out of bathrooms smiling since I was five…

Read more

a month ago · 168 likes · 55 comments · Neuro-Love-Notes

This essay helped me work through the impossible choice of disclosing my disability and losing an opportunity, or hiding myself and risking lasting damage.

One other random update — last night, I happened to discover that our washing machine gasket was blocked and coated with mold. Yuck! I probably washed my entire closet in it the weeks I was stable. Anyone want to share or direct me towards their experience with MCAS + mold? Dave got it all out with bleach and a couple tub clean cycles, so I’m hopeful I’ll be back on the upswing as this trigger is removed.

Thanks for being here, and take care 🫶
Lisa

Friends,

If you’ve got a bit of a bloomscrolling habit like me, you might’ve noticed I’ve been pretty active on Notes lately. It’s helped me get my words in front of more people — and if you’re new here, welcome! I’m sending you a big hug.

I’m also drawn to notes for the quicker, cleaner resolution. Crafting the right quip puts a neat little bow on my experience in a way that life’s been leaving me wanting. And connecting with others in a similar spot makes me feel like I belong.

That said, one morning, I read this note upon waking (oops!) — and it must have primed my brain, because it threw my dopamine hunt for a loop.

I started thinking about depth vs. visibility.

Staying on the surface of my experience is safer, and takes less energy to process. Diving deep can be draining — it’s good, I think, to come up for air from time to time. But I’ve missed the fulfillment that comes from puzzling out how I feel and putting pieces into place. That’s one of the main reasons I love writing, the process of sorting through a messy pile of thoughts and coming away with something more meaningful than the sum of its parts.

After dropping a grateful comment on Tina’s note, I set my phone down to reflect. I lingered in bed a little longer than usual. I spent a few minutes poring over my legs, freeing hairs that got trapped by my compression socks. I rubbed my aching shins and took in my weakened calf muscles. They look like cutlets hanging from the bone.

I redirected my thoughts and started extending my exhales to get my nervous system ready for upright mode. I puttered to the bathroom mirror and noticed cellulite claiming my glutes as I stretched upward in a full-body yawn.

I try my best not to judge these things anymore — they are what they are, the product of years of rest and reprioritization. And yet.

I feel an ache that has nothing to do with illness, and everything to do with missing being well. I miss my muscle tone, the alchemy of pain and hard work into strength. Physical strength — not the kind it takes to live with something impossible and inevitable. The voice of my high school cross-country coach rings in my ears: “Pain is weakness leaving the body.” I miss the days when that felt true, and possible.

I think to myself, how long does it take to grieve a body?

My mind immediately goes where it’s been comfortable lately — the quip, the poem:

The timeline of grief
How long does it take
to grieve
a body?
Maybe a lifetime.

But rather than popping back on to Substack to post, I feel the need to go deeper. To sit with the question and see what else might come up.

I consider grieving my body like a relationship — after all, we’re in relationship with ourselves, our beliefs, and our abilities. According to Charlotte York (Sex and the City), it takes half the total time you were with somebody to get over them. Based on this very scientific wisdom, it could take me over a decade to come to terms with the loss of my former self.

I feel the well-intentioned fixer that lives inside me chomping at the bit. These past years, it’s been helpful to focus on “what I can do” rather than what I can’t. I’ve filled four sketchbooks with doodles, drawings, poems, to-done lists, and gratitudes. I’ve changed my relationship with art-making from something that makes me feel valuable to something that brings me value. A practice that makes extended periods of solitude feel more bearable, relaxing, and fun.

But when the things I can do as a 37 year old narrow to little hobbies and preparing meals — while everyone I know IRL is out doing “normal” sh*t — honestly, it gets old. And unlike our aforementioned SATC pollyanna, I can’t constantly reframe out the grief. I won’t silence the voice saying, “I want to do more. I want to reclaim the things I took for granted, now that I know how precious they are.”

It’s not convenient, or productive, but it’s real. The grief is real. And I’m listening.

It reminds me of a quote I found recently, that hits so hard:

“Grief is so much harder than anyone tells you. It isn’t just sadness; it’s a void, an ache, an unrelenting battle with reality. It’s the endless replay of what could have been, and the cruel certainty of what will never be.” — Stephy’s Place

We can never fully understand any grief we haven’t lived ourselves, and it’s like freaking groundhog day* to grieve the wellness I had, and the illness I had no way of preparing for.

*I loved this piece, A (Groundhog) day in the life by — the term has been living rent-free in my head ever since.

As an anxious over-thinker, I’ve always grieved in advance. I write mental eulogies for people who are still alive. I’m like a combination of Fleabag and Chidi Anagonye from The Good Place — every joy is paired with the realization that joy is fleeting.

Somehow, I did not see this one coming.

What’s weird is that, out of anyone, I probably should have expected it. I get every symptom, every side effect. And I really did fail to look after my healthy(ish) body, every chance I got. I just couldn’t grasp that it could fail me until it happened. I clung to a director level position with Long COVID for two years, hoping things would right themselves eventually. Instead, I got laid off and crashed into severe ME/CFS.

That’s the shame of a life lived in a not-quite-normal body, though. Stomach pain without explanation. Fighting back anxiety and overwhelm. Always feeling like too much. Hating myself for not being “normal,” when that had never been in my control. Why wouldn’t I keep pushing through? Why wouldn’t I assume that what had always “worked” would keep on working for me? There was no cautionary tale.

We’ve only got one body. And yet, most able-bodied people don’t walk around thinking, “what a gift!” For one, they probably haven’t experienced the alternative. And tragically, we’ve been conditioned to do the opposite, to tear ourselves down instead of taking pause in the magic of things working as they should. I’m not going to fault myself for not knowing how good I had it. For undermining my body’s attempts to stay stable, to work for me. But I am sorry about it. I will grieve for it.

If grief is love with nowhere to go, I guess this inner ache is a sign of love for my former body. That would certainly be new. Maybe each time I feel grief, I can redirect some of that love to the body I have now. To the same soul who’s been here all along.

In doing that, I feel myself move beyond “what I can do,” toward “who I am.” Someone weird, and wonderful, and creative, and kind, and often overwhelmed, and disabled. x

Pieces that stopped me in my tracks —

A no-nonsense poem by Alex Dawson. Alex generously shared 30 writing prompts for April (National Poetry Month). Her take on Day 12 felt like a message from the universe. She’s juggling a lot to keep everyone feeling seen and involved this month. I’d highly recommend giving her some love if you haven’t already!

The Shape of Lightning, The Shape of Me by . For anyone who’s ever felt like a storm. I fully resonated with the grief, the intensity, and the seeds of acceptance.

And a couple glimmers ✨ 

A face time with my nephew. He’s started picking up crayons and colored pencils this month. He showed me a drawing of a house with a cat, maybe two. It was unclear. It was beautiful. I showed him a little watercolor sketch I did of a flower. He loved it. This is peak auntie excitement for me. I hope I can encourage him to color with abandon, outside the lines, around people’s expectations of him.

Forsythia lining the side of the road. Dave and I were out on a little drive when I asked him to loop back and pull over, so I could see the sea of yellow up close. He obliged, of course, and then took a voyeur-style video of me taking these photos. It was a sweet, funny moment.

The irony of diving deeper into my grief is that it’s given me the space and capacity to let joy in. It’s a nice reminder that there’s more light to be found. 💛

Thank you, as always, for being here,
Lisa

We’ve had a handful of lovely days lately, and I’ve enjoyed laying in the porch listening to the birds, and scanning for little signs of Spring.

’s daily prompts also have me returning to poetry!

I’ve shared a couple on Notes (here and here in case you avoid the infinite scroll), along with a backlog of quips and reflections from the stillness. Reading everyone’s responses has been the closest thing I’ve felt to community in a while. I deeply appreciate everyone who has taken the time to read, reflect, share, and subscribe.

Recently, I remembered a poem I wrote in February 2020 about a canvasser for The Nature Conservancy. I was on my way home from a divorce mediator, where I decided to keep the ‘peace’ as a means to keep my one and only dog, George, with me.

This poem is about the brief but life-changing connections that help us survive seemingly impossible times. (If you’re here, chances are we’re that to each other.)

Thank you.
In a sea of people trying to save themselves
He’s trying to save the world.
He approaches me
Gently, quietly
Like an apology
I look at his clipboard and tell him
“I’m having a bad day”
Like a question
My inflection asking to be held.
He says “Ok, let’s just talk about that.”
It breaks my heart open to remember
The simple moments that kept me here.
“Can I offer a metaphor?”
He continues,
“If someone gave you $80,000,
And then took $1,000 back,
What would you remember?
The gift or the loss?
Well life is like that, 80,000 memories
1,000 of them is a drop in the bucket
Which are you going to focus on?”
“I think I’ve lost more than 1,000,” I joke
But this one expands to fill the empty space
I can live in it for a while.

If you liked this story, please consider a small donation to The Nature Conservancy. They’re doing wonderful things, and they also send wonderful quarterly magazines, which I’ve been using for my foray into collage. 💚

New Section Alert!

Pieces that stopped me in my tracks —

Tornado by , wife of the late luminary Andrea Gibson. A beautiful, heartbreaking reminder to bless the mess. I need it tattooed on the inside of my brain.

Live Every Day Like It’s Your First by . The way Suleika writes about this gentle reframe is everything. Also: two senior Chihuahuas and a writing ritual to prime your mind for possibility. There’s truly something for everyone.

Thank you (!), as always, for being here,
Lisa

Friends,

If you’re part of the chronic illness community, it’s likely that you’re heard the stat “5% or less of ME/CFS patients recover.” There is currently no cure. It’s a rare person who not only receives a diagnosis but also fully recovers from severe ME/CFS to their capacity pre-illness. (Anj Granieri is one who keeps me afloat.)

While we’re on this thread — there may be more hope than that stat suggests, at least for the relatively privileged amongst us. Anj explores its validity here.

Recovery is considered rare, not only because we’re shooting in the dark, but because of survivorship bias. We’re more likely to hear from the people who remain ill, rather than those who go on to recover — many would rather avoid the suspicion and vitriol they risk from members of their own community. ME patients are deeply tired of hearing they could get better if they only had the resources to try everything under the sun. If they’d just treat their one life like a puzzle to be solved. It’s understandable.

I believe a big hurdle to recovering from energy-limiting conditions is that illness management itself is energy-intensive. From doctor appointments that go nowhere, to so-called specialists who drain our bank accounts, to disability benefits that harm more than they help, it often feels impossible to be ill, let alone get well.

Many of us become victims of gaslighting and go our own way, learning from each others’ experiences. Which, it’s worth mentioning, requires us to become stand-in researchers, coaches, dietitians, physical therapists, comedians, and motivational speakers — whether out of the goodness of our hearts or a need to financially survive. Many of us are attempting to both stabilize AND support while learning through trial and error, which is inherently destabilizing. No wonder everyone’s talking about nervous system regulation.

I’ve mentioned in past posts that I am burnt out on healing. I’ve been doing things half assed, making justifications for myself, and getting anxious and mopey when I feel bad, without doing the regulating activities that used to help me feel better. I’m on my phone WAY too much — I’ve gone back to hiding it in a drawer for my survival.

None of this is a knock at myself or anyone else — it’s recognizing the stage I’m in.

I’m tired, y’all. Tired of trying to heal my body from the inside out. Tired of the lack of support and resources. Tired of being misunderstood, or worse — ignored. Forgotten.

So! Rather than continue to go down that rabbit hole of dread, I thought I’d indulge in a little fantasy — a visualization, as the coaches call it. One where ME/CFS and Long COVID patients actually get the treatment they deserve.

A patient crashes into severe chronic illness. They have rolling post-exertional malaise, or PEM — which, if you’ve never experienced it, makes you feel like you’re constantly grasping at consciousness, “living” inside a body made of lead. Sounds serious! They’re immediately transported, not to a hospital (a sensory nightmare for any ME patient), but a dedicated center.**

Lights and sounds are at an absolute minimum. The beds are cloud-like and can be heated, like a massage table. Face cloths are readily available and always cool. Nurses trained in hospice care are empathetic, compassionate, and adept at communicating with patients’ families. Red light therapy is conducted in bed for 10 minutes at sunrise and sunset to regulate circadian rhythm and provide mitochondrial support. Safe hydration and feeding techniques are followed, whether that be tube feeding support, assistance from a caregiver, or adaptive utensils. Dignity is maintained, always.

Those with moderate ME/LC/POTS would also have the option to be transported to a stabilization center, where they would first receive a diagnosis from a trained specialist, and then be relieved of caring for themselves and others until they have a chance to adjust to their new reality. The goal of these stays would be to educate on pacing and nervous system regulation, in order to give patients the best chance at moving into mild, and avoiding a severe state. These centers would be accessible to everyone, and affordable at-home care would also be available. If / when*** severe patients stabilized to a moderate level, they would be moved to the appropriate center.

All patients would have the option to engage in clinical research to benefit not only themselves, but the chronic illness community at large, and the pursuit of a cure.*

I know I’m dreaming — ahem, visualizing. But top tier, luxury rehab facilities cost up to $2M to build, and up to $100k to operate annually. Large cancer clinics cost $1-2B to build, with operational budgets exceeding hundreds of millions annually. So let’s figure an inclusive, ethically-run fatigue clinic sits somewhere in the middle — $500M plus $1M annually? Take Trump’s 11.3 billion from Iran, and we could have 22 centers. That’s where I think our tax dollars should be going.

Not to war.
Not to war.
Not to war.

What’s my dream for LC/ME this year, on Long COVID awareness day? For our illnesses to be taken seriously from the micro to macro level. For our community to receive the funding, support, and care we deserve. For research to be prioritized, and a cure to be found. For human beings and their health to matter.

Thank you for being here,
Lisa

Here’s some additional information on LC/ME to support this article:

*Researchers have identified significant biological markers, particularly in immune dysfunction, neuroinflammation, and metabolism, that are common to both Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The overlap in symptoms and underlying mechanisms suggests shared pathophysiology. — Scientists identify shared biological roots of long COVID and chronic fatigue syndrome by Massachusetts General Hospital

** “There are only a handful of specialists and clinical centers that specialize in ME/CFS around the country. Many of them do not take insurance and most have waiting lists that can be years long. Instead of seeking out a specific specialty, many people with ME/CFS and Long Covid focus on finding doctors who are willing to be a partner in their medical care and listen to their needs.” — Solve ME/CFS Initiative

***Røysumtunet, a rehabilitation center in Norway, opened a specialized care unit for severe and very severe ME/CFS patients in 2021. According to this report (the first of its kind), “a total of 7 out of 24 (29.2%) patients improved by one level or more. Three improved from very severe to severe, and two from very severe to moderate, all women. Two severely affected patients, one man and one woman, improved to moderate.”

I’m writing this from the depths of yet another blizzard in New York. Winter’s gentle invitation to go inward has solidified into a gleaming white wall, turning the house into an island of introspection. The side road that leads to our driveway has not yet been plowed. We are quite literally stuck inside. I want to avoid the integration of emotions from the past few months—years, even—but I have no choice. I’ve been feeling isolated, emotionally exhausted, and resistant to shifting out of fight-or-flight.

Dave and I watched a couple new movies, Send Help (2026) and If I Had Legs I’d Kick You (2025). Each was nothing like I expected, and gave me a mountain of food for thought. The first explored power and the patriarchy, leaving me quiet for a good few hours, and the second was a surreal, unflinching look at motherhood, requiring approximately two business days to recover. I usually prefer to go in blind and get rocked, but I think I’m officially too rocked to rock lately. I’ve retreated into crafting and catching up on Love is Blind, hoping to cocoon myself back to functioning.

The post I had waiting in my drafts is titled “feeling grateful,” and I know I have been, for so much, and will be again. But if I’m being real, it just feels laughable lately. Describing “a day in the life with Long COVID” is more true right now. It’s what’s getting reflected back to me in winter’s mirror. That said, I promise Spring is coming (I keep telling myself that, anyway) and I’ll return to more uplifting topics in time.

Quick housekeeping: I’m going to mention a few things that help me on a daily basis—I’ll include referral links at the very end for easier reference.

Without further ado…

Having Long COVID is like walking a tightrope, every day of the week.

The first step of the day, the rope goes wild. I call this the “wiggly wobblies.” My heartbeat feels fast and slow at the same time, like racing through mud. Historically very much a morning person, who woke up ready and raring to go, I greet the day in a groggy fog that will never feel familiar. My former self taunts me.

I use a wearable + app called Visible to get my “stability score,” which helps me determine what kind of day I’m going to have. The Visible stability score is based on heart rate, heart rate variability (HRV), and self-reported sleep quality, ranging from 1 (like a hard-hitting hangover) to 5*, or how I used to feel on any given Tuesday.

*Very specific note: for me, 5’s are usually too good to be true—we’re looking for slow incremental progress, not big unexpected jumps. These can mean the body is trying to recover from a large amount of oxidative stress, and require rest just like the lower end.

I’m usually able to intuit my score before I get it, but adrenaline can be misleading—sometimes the days I think I’m okay are the ones I have to watch out for. Getting a 2 has become the most frustrating, because I don’t feel like a 1, but if I don’t rest, I will wind up there and feel pretty horrible for a few days. I’ve tested this theory more times than I’d like to admit.

I know some may ask, do you really need a wearable, or my favorite, “is it a self-fulfilling prophecy?” I ask myself these questions, again, more than I’d like to admit. All I can say is, the weeks / months I’ve taken it off not to get in touch with my body’s cues, I’ve experienced a loss of capacity. So we’re sticking with it for now!

Anyway, all that is to say, my mornings are all about establishing balance, and setting myself up for whatever success is within my capacity that day.

I get up slowly, as if I’ve just had a massage, or more appropriately, my blood drawn. My default is dehydration. No matter how well I hydrate the day before, no matter what temperature it is in the bedroom, I wake up really, really thirsty. I used to kick off the day with a coconut water before getting out of bed, but I find that in the winter my stomach does better with a cup of hot water with Buoy electrolytes.*

*It must be said—Buoy is the absolute standard. They have a 35% lifetime discount for anyone with a chronic illness, minimal questions asked. They don’t add any sugar, which is really important for blood glucose issues with Long COVID. I was nauseous all the time before I started using their digestion drops and rescue sea salt. I’ve gifted Buoy to friends with chronic Epstein-Barr, Fibromyalgia, and Ehlers-Danlos Syndrome (hEDS).

Before I even get up to use the bathroom, I put on my compression socks for support. I’ve developed orthostatic intolerance, which means my body can’t regulate blood pressure or heart rate properly upon standing. Compression stops blood from pooling in the lower body, pushing it back up to the heart and brain, where we need it to be. I’m pretty sure proper electrolytes and compression socks are the reason I’ve never passed out from POTS. They also stop my body from working so hard, which means I can do more. The less often my HR jumps to 120-135 from a resting rate of 58-70, the more I can do with my energy envelope, or current capacity. I’m all about optimizing the energy I can use before my mitochondria start poppin.’

Visible helps you set a “PacePoints Budget” that reflects your current energy envelope. I’d guess that my energy expenditure pre-Covid would have amounted to around 20-30 points per day. In 2024, my nervous system shut down, I tested positive for reactivated Epstein-Barr, and my capacity plummeted to a budget of 2-3 points. I needed a rolling chair to get from the twin bed in my former office to the kitchen, and lived off of Cheerios and pre-prepared foods. When I had the energy, I cleaned myself with adult wash cloths (would recommend these). Over the course of that year, I was able to build back to a capacity of around 10 points. This included household chores and outdoor excursions, amounting to an average of 4,000 steps per day. After starting part-time work again, my budget is currently around 6-7 points.

You might be wondering, what causes this? For one, my autonomic nervous system is busted. This does not mean I’ve had a nervous breakdown. It means my body has been irreparably worn down by some rough coping mechanisms—including lifelong emetophobia and anxiety, disordered eating, overworking, an abusive marriage, a highly stressful pandemic relationship with a conspiracist (granted, he wasn’t all wrong, just in the ways that mattered to my life personally), and raw-dogging a debilitating, multi-system virus—and I need some time to convalesce. Honestly, I need time to rest after writing / rereading that sentence, let alone living it.

As I continue to live my life in the wake of post-viral fatigue, my system is triggered by, well, everything. Foods I used to love, work I could do in my sleep, activities that felt like breathing…back when sleep and breathing came easy, that is. I feel like an overworked project manager, if the project was getting my body to run at 50-65%.

I also often feel like I’m part scientist (N-of-1 trial, baby) and part doctor-in-training.

I’m learning how much histamine plays a role. Turns out histamine’s not just something that causes allergies in the spring—it’s a critical chemical messenger, helping the brain control the autonomic nervous system, affecting breathing, heart rate, and temperature regulation. Covid can trigger Mast Cell Activation Syndrome (MCAS), a condition in which mast cells (white blood cells in tissues) go into overdrive, excessively releasing histamine and other chemical mediators.

Our bodies have four types of histamine receptors—Long COVID especially interacts with the first two. Every day, I make sure my meals are free of histamine (most notably, spinach and tomatoes) and histamine liberators (most depressingly, chocolate and wine). Every night, I take Zyrtec (an H1 blocker), and I add on Pepsid (an H2 blocker) if I experience a significant trigger (physical, emotional, environmental). Planning sucks, but beats waking up at 2am whimpering with stomach cramps or gasping for air through congestion that makes me google “do I have cystic fibrosis.”

I’ve learnt more than I would ever like to know about neuroinflammation. I manage the amount of time I spend on screens, having conversations, and being intellectual (aka, myself). Mental overexertion inflames my brain, which stokes the flames of my anxiety, and brings out the ANTS, or automatic negative thoughts. ANTS are harder to feel my way out of, and take a lot of energy, creating a cycle. I take Effexor, an SNRI to help keep these at manageable levels, because saving energy is key for living my life.

While I’m no longer housebound—one of the things I’m most grateful for—I spend most of my time at home, even when it’s not 17°F and snowing outside. I emerge for sporadic outings where people see me showered, smiling, and high on life. They tell me I look GOOD, and I try not to respond, “thank you for noticing, I watch a lot of makeup tutorials and have learned the correct way to apply my blush.” They don’t see the rest of the days, they don’t understand the rest of the days, and I don’t blame them for this. I won’t pretend it doesn’t sting that people don’t check in and dive in the way I used to do, but I never did those things with expectation. It was my comfort zone, the only way I’ve ever known how to operate. So I lean most into relationships with people who know how to operate that way too, and match energy for the rest. This is helpful for living within my limits and feeling more fulfilled by the life I do have.

I debated outlining this post by the hour, because I love a good organizational structure—but like all the other jobs I’ve ever had, each day managing Long COVID is truly different (wink). The tools I’ve collected in my toolbox no longer happen at the exact time I’ve decided they need to. They happen when I need them. I tap into my adaptability, my resilience, my creativity, prayer to some higher power, whatever will get me through these frustrating, painful, life-affirming days. I let go of the tightrope, if only for a moment.

Thank you, as always, for being here,
Lisa

Visible: Coming in at $20 per month, this isn’t exactly a subscription you forget about, but here’s $20 off the wearable if it’s something you’ve been wanting to try.

Buoy: This referral link gives you an extra 20% off on top of their chronic illness discount, and I get a 20% kick back too. 🤝

Compression socks: I love mine from Bombas!

I never liked Valentine’s Day. It served either as a commercial, performative barometer of my relationships, or a reminder that I was alone. And while I love celebrating love, there’s nothing as uniquely depressing as streams of men returning home from work with gas station flowers. So yeah, I could generally do without it.

That is, until I met George. He was a 9-month-old love bug, born on February 14th. Granted, he’d been a stray, so someone definitely made that up to make him more adoptable (as if he needed it, psh). But it didn’t matter. He was my valentine.

George was my best friend, my running partner, my snuggle buddy, and my protector. He was my constant through so much change. He endured the same cycle of abuse I experienced in my marriage. When my ex-husband and I split, George stayed with me. When the pandemic hit, we moved to my family’s summer house and lived in isolation. What started out as the worst year of my life became one of the best. We ran unleashed on the beach and cuddled up at night, developing a sense of safety together.

Heartbreakingly, we also developed chronic illnesses together. George got diagnosed in 2021, two years before I collapsed into severe Long COVID and ME/CFS. He was by my side when I thought my heart might actually give out from exhaustion. I made peace with it, in no small part because he was with me.

George had protein-loss enteropathy (PLE), a severe intestinal syndrome with a survival rate of 12-18 months. With dedicated and devoted care, he gave me and Dave three extra years of love. We would have kept going forever. I hope he knew that.

We lost George on November 15th. The ER vet wrapped him in a soft, fuzzy blanket, the kind I would have brought for him if I’d known it would be our last trip. I kissed his velvety forehead a few extra times, knowing it would never be enough, and thanked him for being there all those years. For being mine. Then, we let him go.

This winter has been colder than usual, and clouded by grief. A painfully short time after George passed, we got our first true snow storm in years. Thick and sticking, leaving globs of icy confection on the evergreens and sycamores lining our neighboring streets. I started to cry as I opened the blinds to a sparkling winter wonderland. George would have had an absolute blast.

-Goodbye, Valentine-
Thank you, my dear friend
For knowing me in this lifetime
And nestling in the crevices of my soul.
I hope that’s where you’ll stay, now.
I consider sending a teaspoon of your ashes to a jeweler in California
Who promises you will rest forever on my heart
And I feel comforted yet confused, because here you are — 
In the sunrise itching my eyelids
The squirrels rustling dried leaves
The hungry gull perched and peering by the bay
In the snap of a stick I toss for a Norwich Terrier
Who is absolutely adorable, and unbearably not you.
You’ve become everywhere
And you’re still everything to me.
The animal in me misses the animal of you — 
Your weight at my side
The wordless understanding
The unbreakable bond.
It was all without pretense,
It was unconditional love.

I welcome photos of your valentines (furry and otherwise) in honor of George today and everyday <3

All my love,
Lisa

Friends,

It’s been a while since I thought about this topic, which speaks to my current level of stability! The first two weeks of January were personally peaceful, thanks to a month and a half off Instagram and getting my news in dribs and drabs from Dave. (It’s not that I don’t know or care about what’s happening in this country, but years of illness have taught me to take things as they come, and do what I can today.)

Last week, I went to acupuncture, did free qigong at the library, and took Sarah Jackson’s monthly class on releasing stress and trauma. The effects compounded and inspired other shifts. I made a conscious decision to start expressing my needs more kindly and directly, and to lean into the good in my life. I established a daily break for rest and embraced it willingly and gratefully.

Then the PMS gremlin arrived and all that went out the window.

The past couple of days, I’ve felt charged with anxiety and frustration. My bedtime has shifted back about four hours, in part because MCAS flares are causing adrenaline dumps when I usually go to sleep, but also because I can’t stop listening to Before We Were Strangers by Renee Carlino. My monkey brain is running absolutely rampant — I had Taylor Swift’s “Honey” playing in my head for HOURS last night.

This morning, I started to get annoyed about feeling annoyed. And not just that — 

Annoyed that my body has a countdown clock going while I make breakfast. Annoyed that every cell in my being is screaming to sit down. Annoyed that I can’t accept a standing hug from Dave and sway with him in the kitchen. Annoyed that my chest feels like it’s being compressed. (For the record, I’m wearing compression socks!)

I sit down to eat but the peanut-buttered toast I savored yesterday is unappetizing. Dave asks me how it is and I tell him as much. I tune out and force it down. I just want to take my meds and try to fix the way I’m feeling. I’m reminded of how things used to be on a daily basis, when I was housebound. I have a lot of lessons from that time, and one materializes to help me through what I’m experiencing today:

There is nothing inherently “good” about feeling good.

Wait, what the heck does that mean? Of course feeling good is good! When I feel good, my mornings are blissful. My relationship feels loving. My life feels precious.

But what if those things could be true regardless of how I feel? What if having a bad day (week, month) is not a barrier to feeling joy, gratitude, and love? Obviously, there are the neurotransmitters, hormones, pain, etc. to contend with. I’m not minimizing any of that. What I’m talking about is the suffering we add on top of it. The suffering that comes from the stories we tell ourselves, like assigning “good” or “bad” to our physical, mental, and emotional states.

This can be a hard pill to swallow after years, or decades of medical gaslighting, but beliefs play a role in recovery. They are not the primary cause of our physical state. They are not the direct cause of our crashes. That is to say, it’s not in our heads. Otherwise, we wouldn’t get hit by barometric pressure, and the weather. We have genetic differences and system imbalances (EDS, POTS, ME/CFS), period.

But beliefs cause the stress and discomfort that lead to coping behaviors, that intensify the imbalance, that leads to the crash.

My beliefs were so damaging that I never stopped to recover from anything — not my disordered eating, not my toxic marriage and divorce, not my years of increasingly heavy alcohol consumption, and definitely not the poor treatment I received not only from others, but myself. Things built and built until it all came crashing down. In healing from severe Long COVID and ME, I had to rewrite my whole system of beliefs. I had to change how I operated in the world, one micro behavior at a time, for years. The pain slowly transmuted into love. And now I get to say the following statements and actually mean them:

• Sickness and disability are not evidence of weakness.

• I’m not a worse person when I feel sick or disabled.

• I’m not a better person when I feel strong or productive.

• I can be grateful for life while grieving what I’ve lost today.

• Love goes both ways — I can receive help instead of giving it.

• I get to decide who has access to me, and when.

If any of these made you cringe or shrink, I would start there.

Regardless of whether we feel sick or well, bad or good, the day is going to happen. We get to choose whether we go with the flow or fight ourselves like hell. Acceptance is how we break the cycle that puts additional stress on our bodies and gets in the way of stabilizing and healing.

I finished drafting this post around 10am. I had a vague awareness that I was working against a self-imposed deadline, to hit send before heading to my second qigong class at 10:30. I considered skipping the class entirely so I wouldn’t have to break my train of thought, and also to avoid stressing my body with the 5-minute drive and 4-minute walk to the depths of the library. Then I thought about the message we send to ourselves when we show up (to safe things, please) regardless of how we feel. I matter. I went in my PJs without brushing my teeth. The teacher remembered me and grabbed me a chair.

There was a children’s class happening on the other side of the wall, and we could hear them singing. I smiled. Over the course of the class, my heart opened, my muscles loosened, my smile widened, and my receptivity to life expanded. When I got home, I gave Dave a long, standing hug.

As I used to say when I was recovering from severe — how I wake up in the morning is just a starting point. I have hope for the rest of today.

Wishing you all a bit of acceptance, hope, and joy today.

Hugs,
Lisa

Friends,

Dave and I are three seasons into Alone, and I cannot stop talking about it.

Available for free on History, Alone is a reality competition that drops participants in the wild with only their wits and 10 items to rely on. They stay as long as they can (usually 30-60 days), and then “tap out” using a provided satellite phone. The last contestant remaining wins $500,000 and bragging rights in the bush community.

As much as I love trying to guess who will outlast the rest, what’s even more interesting to me is how different life looks in survival situations — particularly what hunger does to a formerly healthy bodymind. Weight melts off people’s ribs and cheekbones, and food becomes sacred. There’s a lift in morale akin to mania when participants catch a fish or trap something as small as a mouse. Captions sprinkled through the episodes show the protein, calories, or nutrients that will advantage someone via their meal. It’s like anti-anorexia advertising. I’m amazed by how something so silly and entertaining has rewritten the way I think about food.

Growing up, I was naturally skinny — gangly, really. I had my runner-dad’s build and was nicknamed “gazelle” by my middle school cross-country coach. I competed through high school and joined a D1 program in college. My freshman year, I’d eat ten plates of food after practice and carry a cup of cereal back to my dorm, still hungry.

This all changed when I developed persistent tendonitis and bursitis, and I decided to trade daily ice baths for making friends at my sorority. We were coming of age in the late 00s and early 2010s, to give you an idea of the vibe. I shared a room with someone who had anorexia and developed body dysmorphia, which I still experience to this day.

Fast-forward to graduation — it was the financial crisis, before internships had rules. My first job paid $30 a day for 15-hour days. Yes, per day. That’s right, $2 an hour. Imposter syndrome and stress were my baseline. A strict dairy and gluten-free diet became my safety blanket, giving me relief from lactose intolerance, IBS flares, and emetophobia (an intense fear of throwing up). This evolved into eating very little at all, and relishing the safety and control I felt holding hunger in my belly.

From there, I sadly started to enjoy being toxically-thin. Skinny jeans slipped on comfortably and didn’t dig into my touchy tummy. Cheap, baggy sweaters looked “fashionable.” I watched a lot of ANTM (iykyk) and fantasized about escaping the world of advertising to model (as if that would be any better). This was around the time a doctor prompted me to lay down to find my heartbeat. He told me that if I kept going the way I was going, I would die. I was 23.

We call that a wakeup call. I stopped intentionally cutting calories, gained 15 pounds, and spent my savings on a 40-day backpacking trip across 10 countries in Europe. I devoured Spanish omelettes in Madrid, English breakfasts in London, and roasted chicken with beer in Munich. I wish I could say that was the end of my disordered thoughts, but after years of therapy and coaching, they don’t lead to action anymore.

As I watch Alone now, I’m four years into post-COVID syndrome. I realize something the fashion magazines never told us — the side effects of starvation are not pretty. The contestants start slipping up, literally injuring themselves with their tools. They experience mood swings, poor decision making, exhaustion, shortness of breath, and chest pain. They often tap out of the competition for fear of doing lasting damage.

I ask the TV what years of that might do to a person. Then I crave fish as I watch someone thank the creature they’ve just pulled out of the water, and savor the “soup” made with its carcass. I go “hunting” through my fridge when I’m hungry. I relish the safety and nourishment I feel when I’m full.

On Alone, food = life. Berries and mushrooms provide energy. Fish and game provide strength. The more contestants eat, the better their outcome.

It’s the same for those of us with Long COVID. But instead of chopping wood, building a shelter, and surveying the land to survive, we’re exerting ourselves just by existing. With widespread inflammation, mitochondrial dysfunction, and nervous system dysregulation, we quickly churn through energy that would have sustained us in the past.

When I first developed post-COVID syndrome, I lost so much weight that I appeared to be back in the throws of my eating disorder. The devil wears prada on my shoulder might have thought I looked cute, but I’d come far enough to know this was something I needed to look into.

I’m no expert, but I did a lot of research, and here’s what resonated:

• According to the Long Covid Dietician, the metabolic demand of Long COVID is similar to COPD, and our calories must increase accordingly.

• According to Anna Marsh Nutrition, stabilizing our blood sugar (with frequent small meals) is key to supporting our nervous system.

I’m grateful to have had the energy, time, and money to find and follow this guidance. Upping my intake of calories, protein, fat, and fiber gives me the fuel I need to support myself through chronic illness. It’s also a way of showing myself love, as I repeatedly reorient towards nourishing my body, mind, and soul.

While food has proved to be an important lever throughout my life, it wasn’t until watching Alone that I came to think of it as life-giving.

As diet culture rebounds, fueled by GLPs and celebrities and Tiktoxicity, I want to shout it from the rooftops — the goal is not to lose as much weight as possible.

It’s to live as much life as possible.

Thanks, as always, for being here.
Lisa

We’ve nearly made it to the end of the year. How we all doin?

I’m being pulled to reflect and restart today, on the winter solstice. I’ll start by sharing a blessing from last year’s post, because it’s lovely and much needed:

May you find peace in the promise of the Solstice night,
That each day forward is blessed with more light.
That the cycle of nature, unbroken and true,
Brings faith to your soul and well-being to you.

As I look back, I’m feeling gray, to be honest. There was one magnificent burst of color this summer, but after that I seem to have slowly petered out. Completely understandable, as life’s been a lot lately — from developing severe anemia, to financial strain, to losing our wonderful pup, George. While I’m finding moments of holiday cheer, I have a weary feeling inside. “Bit of a wobble,” as my UK friends say.

Still, I’m taking a stab at a Ta-Da list again this year, if only for posterity’s sake:

1. Dave and I started couple’s therapy.
This has been such a meaningful investment in our relationship. We’ve unearthed trauma from our individual histories and learned how it impacts us as a couple. We’ve examined our pattern together (I get riled up, he shuts down). I realized I’ve been subconsciously recreating the toxicity I experienced in my marriage — I believe requests will be met with conflict (not the case whatsoever) and go into fight-or-flight to get ahead of it. A malfunctioning nervous system (aka dysautonomia) isn’t doing me any favors, either. Per our therapist’s recommendation, I’ve decided to try being vulnerable and expressing my needs directly. What a concept! Still a work in progress, but it’s been transformative so far.

2. I completed a NYSS virtual painting marathon in June (wrote about it here).
This was easily the peak of my year. 10 days, 6-8 hours of creating per day!** It shifted my creative outlook from “I must make something good” to just “make, make, make.” I felt free, inspired, childlike, flowing, and happy. (I’ve been putting my energy into making money these past few months, but need to get back to making art, stat.) Dave helped with so much to make it happen, and I realized just how much energy it takes simply to exist on a day-to-day basis. When all that was taken away, I bloomed.

**Folks with ME / PEM — I see you, and if you have the ability, please be mindful with big energy expenditures like this. In a perfect world, I would have built up my capacity first, but I got financial aid, got super excited, and decided not to pass it up. On July 1st, Dave took me to the ER for chest pain. Lesson learned!

3. Wow, Dave moved in August 1st!
This was another massive shift, and not without its triggers. My past two cohabitating experiences didn’t go so well, and it’s Dave’s first time living with a significant other. I’m impressed with how honestly we navigated the transition, and grateful for the cozy feeling of home we’ve created and earned together.

4. I made my first face-to-camera appearance(s) on Instagram (here and here).
I’m so proud of myself for showing up exactly as I am — I’d go so far as to say that’s some of the most important work of my recovery. It takes an unbelievable amount of energy to mask up and hide ourselves away. On the topic — I really, really resonated with this post from .

5. I started driving longer distances, and taking on freelance work again.
Either my mental capacity has grown, or I’ve got energy to spare with my daily steps at around 2,200 (down from 4,000). I’m planning to recalibrate and safely address my physical capacity once I resolve my iron issues.

6. I published 12 Substack posts and got my first paid subscriber!
I think I’m officially… a writer?! And it means so much that a stranger would pay to read my words, supporting me and my work on here. From my heart to yours, thank you. <3

7. Dave and I leaned into community.
As I started getting out more, I was able to strengthen multiple friendships, and we met two new beautiful babies! We also managed to see my nephew, PJ at least once a month (except for one month when he had a cold).

8. I got my first dental cleaning in years.
It was terrifying, yet cathartic — kind of like chopping off all your hair. I’d actually done a decent job keeping up with flossing (anyone with health challenges knows how tough this can be). Two words: bathroom. chair.

9. I took my first flight since 2023!
Dave and I visited Chicago for the first time :-) and I’m most proud of myself for using wheelchair assistance. We had great experiences in both airports and at the Art Institute, which allowed me to 1- survive the trip and 2- enjoy as much time as possible. It was pretty scary how much better I felt — most everyday spaces aren’t accessible like that, and it made me miss the ease of existing as my former self.

I’m grateful for the reflection that writing gives me, the nuance. At first, I found myself comparing to more uplifting health progress last year, and feeling shame that I had stagnated. (Like, by what definition?! It’s literally not even true. And definitely not something to feel responsible for, might I add.) But what I’ve realized is simple — lots has happened, and I’ve done my best.

I’ve decided that my word for 2026 is “Authenticity.” I’d like to renew my sense of self by devoting more time to whatever lights me up and feels sustainable for this body. That’s how I create an environment conducive to healing. If you were to pick a word (or already have!), what would it be?

Sending love to all and wishing you moments of genuine peace and joy.

Thank you, as always, for being here,
Lisa

I had to peruse my past posts to see if I had used this title already. Turns out, nope, despite feeling all the grief these past years, something else always won out. Speaking of which, may I take a moment to revel in 18 published posts and 8 drafts—who is she?! I’m also feeling proud.

I’ve been shot to hell this week. Dave is playing bass in Nashville with Sarah Gross (she’s amazing) and sh*t hit the fan while he’s away. Murphy’s law and all that.

Our pup, George woke up the first morning mostly blind. Then my sister-in-law’s dad passed. It was sudden and heartbreaking, and I wish I could support them more than I’m currently able. I missed out on taking my nephew trick-or-treating, a welcome reprieve for them after a really rough week. And the supplies I sent came to my house instead of theirs, thx to brain fog. I’m doing the best I can, I repeat to myself.

Turns out, my remaining fatigue wasn’t “just” anemia. Not only did I have a ferritin of 5—how am I alive, to quote the supplement salesperson—but my PEM (post-exertional malaise) has returned after hopefully stretching my limits the past couple of weeks: a trip to the city; a (seated) Jeff Tweedy concert; a puppy adoption event at a local brewery; and many spooky movies leading up to Halloween. These limits are in outer space compared to where I was, when severe. And healing isn’t linear. I know these things logically, but it doesn’t stop me from feeling crestfallen. Defeated.

Don’t get me wrong, I’m grateful for my newfound resilience in the face of stress. I’ve been able to live independently for several days, take care of the furboys, do some online Christmas shopping, and listen to TV reruns and audiobooks with my eyes closed. This is still a pipe dream for many with Long COVID and ME/CFS.

That said, I really wanted these four or so days to paint, to work, and maybe even binge watch the new season of Nobody Wants This (I do, I want this). You know, a little staycation to make up for not having the energy or funds to join Dave on a real adventure, just yet. A wee bit of romanticizing life in the midst of, well, the horrors.

I’m not looking for advice or other interpretations of my experience. I’m deciding to sit in the grief, the frustration, the longing—the sh*t, as they say. That’s not just okay, but needed sometimes.

I also processed by writing a couple poems, which thankfully helped my crushing forehead pressure dissipate. I’ve decided to share them as an example of something I think is pretty healthy to do. Writing them helped me name and close down a couple “programs” running wild in my mind (frustration, doubt) so I can focus my energy on a 45-minute drive to the funeral home later this afternoon.*

-forcing bees-
I like myself better when I’m doing more
I’m not sure when that became a crime
Like forcing bees to sit and wait
When they’re built to build a hive
I’m not asking to be busy for busy’s sake
Overworking till I die
I just want to want to feel the sun
I just want to be alive.

-hypothetical questions-
Is this illness real or in my head?
Can I let it go and get on with it?
Right now, it doesn’t feel that way
But hey—nothing’s real, right?
Does my “energy go where my attention flows”
Or did I lose touch with me?
Which me knows me, really?
Did I convince myself I was okay?
All I know is, then I was.
All I know is, now I’m not.

I should note that I didn’t sit down, blank paper, pen in hand, and write these out. I started by scribbling, scrawling, crying, letting my hand move with a mind of its own. Then I got into the space where I could turn sh*t into poetry. I hope it helps someone.

*While I’m not feeling entirely stable today, I consider the service to be non-missable, so I’m about to eat some chicken and crack a Recess mood for support. Someone else with Myalgic Encephalomyelitis might make another choice, and that would be more than understandable. I don’t advocate for pushing through as part of healing. Only we have to live with the consequences of how we choose to use our precious energy.

Thank you, as always, for being here,
Lisa

It’s finally starting to look and feel like fall in these parts, and I’ve been enjoying sacheting around the house (and being horizontal) in a floor length snuggie.

Things have also picked up considerably, life-wise:

• Have I mentioned that Dave moved in? We’ve been making things feel homey and even having people over (27, to be exact!). His birthday party / housewarming definitely tested the limits of my energy and nervous system, but simplifying the food to pizza and wings helped considerably.

• We partnered on some branding work for a local brewery, and I picked up another design project with a former-boss-turned-friend who went on to cofound a purpose-driven sunscreen brand, Good Instincts, in 2020.

• I drove to my biannual appointment at the Long COVID clinic, as well as the vet.

• Our 10-year-old pup, George suddenly started refusing to go down the stairs. The vet detected issues with his depth perception, and we’ll find out more at the ophthalmologist. Carlos 🐈‍⬛ began drinking considerably more water and vomiting again, a year after his acute kidney failure diagnosis and miraculous rebound. He’s doing okay for now. I wonder if animals experience the October slide alongside their humans with chronic conditions?

• And finally, there was that massive storm that turned out to be, thankfully, not so massive, but left a giant limb of my favorite tree strewn about the backyard. #RIP. It could have been much worse. But when it rains, it pours, literally.

That is to say, I haven’t had much time or energy to write. But I’ve noticed that even when I do sit down to draft a post, I question what I’m doing here.

I started my stack at a time when I was living with severe Long COVID and ME/CFS. I’d been bedridden for months at a time and was still mostly housebound, which meant I spent very little time engaging with the outside world (mostly through doctor visits, which are not on my list of things that qualify as a good time).

My original goal for “My Long (Covid) Pause” was to give this stage of my life meaning, and keep myself from sinking into despair. I spent my bleary, dreary days doodling in my sketchbook and talking to my notes app, reaching for the lessons. If I’m being honest, I (naively) thought of this as a hero’s journey, a path from bad habits to good ones, illness to wellness. The nature of a pause is that it ends, and it gave me hope to imagine my pause not only ending, but becoming a beacon for others in my situation. Maybe I’d write a bestselling book about the paradigm shift of slowing down, about how I changed my life and learned how to heal. Maybe I still will.

But friend, it is so much more complicated than that.

It’s one thing to understand that “healing is not linear,” and another to live it. I started joking that posting was jinxing my recovery, because each time I made some grandiose announcement about my capacity increasing, it would dip again. With time, I realized I had painful beliefs about being perceived, which brought up emotions I wasn’t ready to process, which led to nervous system dysregulation, which contributed to very real physical symptoms. That’s the mind-body connection for you.

With this realization, recovery stopped looking like a long line into a club I didn’t yet have the password for, and became something more like a dance. I think this will always be a work in progress—I was never a great dancer. That said, it goes like this:

(1) Support myself until my capacity increases; (2) notice my body feels safe enough to feel something; (3) pull back to process it. Rinse and repeat. Back-step for major life events and other surprises. That’s been my recovery in a nutshell. Who knows how much stuff I’ve got left to process, probably enough to fill a lifetime. But I’m learning real recovery is in how we approach life, rather than some magical place we arrive.

Back to m’stack. If I could summarize my writing now, it’s about life in the in-between: reconnecting with the world around me; practicing presence and compassion; and experiencing joy, grief, symptoms, and triggers along the way.

Meaning basically, I write about everything? And sometimes I stress out about how valuable that is, really. And that stress keeps me from writing. I see others doing this platform the “right” way—staying in their lane, posting the same day each week, and sharing “brand-aligned” daily notes—and I worry that what I’m doing is confusing, or not enough. But then I think to myself, even if I did have unlimited energy and steadfast motivation, would sticking to a single point of view be authentic for me? Maybe writing from a place of…all over the place is what makes me, me. Maybe it’s okay to write from the uncertainty.

That’s not to say I couldn’t use a smidge of structure. A mentor and friend, , recently told me she’s setting aside a day of each week to write. That’s pretty impressive for someone with 67,000+ Instagram followers, a clinical coaching practice, and a family! If she can do it, maybe I can too. Because it’s not performative perfectionism. It’s making time for art. It’s documenting the dance. And to channel Mollie, that would be heroic for me.

Time to bring this post home. I promise it won’t be all meta here. Here are a handful of other topics I’ve been chewing on:

• Tools and management strategies for living with Long COVID

• How creative expression has helped me heal from trauma and illness

• The one-two punch of chronic conditions: turns out I’m anemic!

• Feeling a shift: getting back to work, on my terms

• The pros and cons of procreating for me, personally

• How to support someone who is going through it right now

Do any of these stand out to you? Hit reply or let me know in the comments and I’ll try to prioritize future posts accordingly.

My writing will continue to be free for the Long COVID community, because I believe it’s important to recognize my relative privilege in taking time off and learning through years of trial and error. At the same time, I’m deeply grateful for my first paid subscriber! 🙏

Thanks for joining me here, wherever I am,
Lisa

One especially spirally night, I wound up using my scheduled rest hours to read up on tariffs, martial law, homesteading, and bugging-out. Counterproductive, to say the least. I mean, I did order a raised garden bed for my window herbs, so not a total loss? But by the time I realized both the fur-boys and I were hungry, it was past my bedtime. I called Dave, on his way back from playing a gig, which helped me break the scrolling spell and get out of bed.

Our rescue “recipe” for oops-I-spiraled-again nights consists of packaged gnocchi, vegan pesto, and salty, air-fried sweet potatoes. I’ll share it below in case your tum also just went ‘mmmmm.’ It’s quick, yummy, and relatively easy to make.

While the electric kettle heated up (hot tip: it’s faster than a sauce pot) and the sweet potatoes emitted their lovely christmassy aroma (hot tip #2: add cinnamon), I did my best to come back to the present moment by doodling and journaling. None of the things I had read about were “right here, right now.” And the fact that I had fallen into doom scrolling and hyperfixation didn’t mean I was any less of a person. How could it, when so many good people live that way every single day? Best to talk to myself as a friend and try again tomorrow.

Here’s the note I wrote to myself for the morning:

be kind to yourself today.
put on tinted moisturizer and smile in the mirror
rub lotion on your hands, gently now
into the cracks where your fingers meet your palms
sip water before your mouth gets dry
don’t punish yourself for the harshness of this world
you may think evil’s won, but it’s just the louder force
goodness is quiet
it’s the nuzzling of shoulders after a misunderstanding
it’s the lightness of reconnecting with your soul
it’s the sunshine streaming in after an endless night
things might look bad right now, but the world is good
you are good
you are good you are good you are good
you are good.

Love and kindness,
Lisa

Lisa + Dave’s Potato Rescue Recipe…

Ingredients:

• 365 Potato Gnocchi (or any pasta)

• Gotham Greens vegan pesto

• 1-2 sweet potatoes, rinsed (or pre-cubed)

• Olive oil, sea salt, and cinnamon, to taste

Tools:

• Amazon Basics Electric Kettle

• Emerald 4L Manual Air Fryer

• Cutting board

• Medium-sized sauce pot

• Pasta strainer

Instructions:

Sweet potatoes

• Preheat air fryer to 390°F / 200°C

• Pour peeled potato cubes into air fryer (careful, she’s hot!)

• Drizzle with olive oil, sprinkle with salt and cinnamon, and shake ‘em up

• Set the timer for 7 minutes, check and shake, then cook another 7 minutes

Pasta

• Fill electric kettle to max (mine is 1.7L) and boil

• Pour boiling water into your medium-sized sauce pot, turn heat to high

• Separate gnocchi in package and drop into pot, carefully <3

• Cook 2-3 minutes (till they float), or follow package instructions

• Strain pasta and gently toss with a couple heaping spoonfuls of pesto

• Top with sweet potatoes and another sprinkling of sea salt

Give yourself a big hug and enjoy your potatoes on potatoes!

The prompt this morning (Day 2) was based on the essay, “Just Ten Images” by : “Maybe you can’t sit down and write multiple pages or hundreds of words, but I bet you can come up with ten images from the last 24 hours.”

And so I did. Memories popped up in no particular order, and it felt freeing to write them down as a random list, instead of recapping the day from start to finish.

The past 24 hours have been pleasantly unexpected. Dave had a gig in Philly yesterday so I was on my own, which usually leads to a lot of sleeping and wallowing, in between feeding the cat, the dog, and myself (in that order—they own me).

Not this time! I was able to drive 10 minutes, take George for a walk in our old town, get ready for an engagement party, drive another 30 minutes (wowza), walk into a gathering of people I mostly didn’t know, enjoy some light food and conversation, and get myself home in one piece. In Long COVID language, I ran a marathon. (Don’t worry, I have lots of rest lined up this week.)

Here’s my list of ten mental images to commemorate a very unlikely day:

1. George leading us through the gift store, collecting head scratches from each person he passes. An adventure, just like the old times. I’m doing right by him.

2. The store owner’s warm recognition. I said “see you soon,” like I still lived in town, or maybe lived there again. I miss having a healthy mix of quiet and community. I wish I could move our house there and just walk out the front door.

3. George rolling around in the grass. He really loves being outside. The rest of his day consists of sleeping as close to me as he can. He’s such a good dog. I want to be able to give him more adventures. I want to be able to give him a bath time ritual and file those damn nails. I want him to live as long as caninely possible.

4. A friend’s gray head of hair. Have I really not seen him in so long that I didn’t know his hair was gray? Maybe he’s been keeping it short. It scared me, if I’m being honest. To age is a privilege, and yet we’re aging all the same.

5. An acquaintance eyeing me after I told her my age, and accepting it at face value (pun unintended). I used to look young for my age, like 20s in my 30s. I’ve lived a lot of life the past five years—from getting divorced, to getting Long COVID, to getting laid off. Funny how certain things you “get” feel more like loss. Maybe it’s harder to accept aging when it’s not all smile lines. But I’m happy to be here, and use the elevens on my face as a reminder to send myself mental forehead kisses.

6. The gratitude and pride on my dear friend’s face because I made it to the lovely party she was hosting. I showed up for her against the odds! What a feeling.

7. The mourning dove that’s made a nest on my favorite hanging porch plant. She’s all but smothered it to death, but I don’t mind because it’s the perfect place for her to rest and protect her two beautiful eggs. I’m honored to see her there day and night. Her body is a perfect circle and it makes me giggle.

8. The symmetrical blooming cuts on my left and right second toes, which I acquired while shaving before the party. A memory from some awkward summer: “Girls don’t have hair on their toes!” What does that make me, then? (Italian.) Anyway wow, I shaved my legs and still made it out. Nice work, me!

9. An adorable almost-5-year-old’s face when she told us she was going to Disney for her birthday. I almost wanted kids after that.

10. My sketchbook page from yesterday morning, which read: “I don’t feel pulled to colors anymore.” I used to look at a line of markers and be able to pick out a few according to my mood, but it’s not automatic lately. Has the routine gotten old? Am I mentally exhausted? I’m burnt out on healing, I thought, it depresses me. Green was the closest color to interesting and I drew leaves stretching across the page. I kept writing and pulled several other colors to fill the gaps. Maybe the art of meeting myself where I am brings a shift. “Art” was supposed to be “act” in that sentence, but I like it better this way. The gray apathy eased and I went about my day. Maybe I let color and possibility in when I let myself be, just as I am.

Where I am
I don’t feel pulled to colors anymore
I know joy, like the colors
Is everywhere
But I can’t feel it like I did.
I’m weary
Wiped out
Overburdened
In other words, burnt out.
But maybe after saying it,
Something starts to shift.

Have you experienced a similar shift before? I’d love to hear about it in the comments. Also, how good was Ash’s prompt? Let me know if you give it a try. x

Thank you, as always, for being here.
Lisa

It was July 14th. Dave and I had just spent a beautiful weekend by the beach, our best trip together since I crashed into severe Long COVID. We didn’t do anything flashy—our one excursion was a balmy roadside Lucharitos, listening to Dave’s musician friend play stunning renditions of our favorite songs on keys. (All the more impressive considering his blindness—you can find him here.) But the whole thing just had that sweet, special air of right place, right time.

An aside for context: I grew up spending summers by the bay on Long Island. An avid rock collector, I’d also come across little pieces of blue tile that washed up with the tide. Sometimes pure cerulean, sometimes speckled with white, always exciting. As I got older and busier, finding these little treasures became even more meaningful. One appeared during a summer break from college, after meditating in the sun and feeling my first moment of connection with God consciousness. Another during lockdown, after I left my toxic life in the city to live alone at what felt like the end of the world. To me, the little pops of blue = thumbs up from the big U.

I found four (!) pieces of tile on our four-day weekend. Yes, I was four for four in magical gifts from the universe. What’s equally amazing is that I was physically able to take that many walks on the beach, each time climbing 17 steps to get back inside (before you picture something out of Sirens, it’s a modest beach house that got clobbered by two hurricanes and wound up on stilts).

The message my heart took from those tiles was: you’ve been to hell and back several times, kid, but your hard, or rather, soft work is paying off in spades. Compared to this time last year, I’m less reactive, more trusting, and overall, more at peace.

Dave and I had taken two separate cars to transport the cat, dog, and wall of gear he needed to play a gig on Friday. Before heading back, I wondered aloud if we should stop at the farm stand to get flowers for the front porch—a little plea from my inner child to make home feel a bit more like home. But we were fully packed up and the cat was fully bawling at this point, so we agreed to do it another day.

And yet, as I watched Dave’s car pass the farm stand and head towards the expressway, something in my heart pressed that I didn’t want to wait another month before getting flowers. I was morbid even before chronic illness, and I literally thought, what if I die and we never got the flowers? So the pup and I pranced into the 87 degree heat to assess our options. A very nice man helped me get a couple large baskets into the front seat, and I grabbed a bouquet of mixed sunflowers for good measure. Little Lisa was beaming from the inside out.

Back in the car, I blasted the AC and threw a photo up on my stories to share the joy. And then, right before I closed Instagram, I saw Meg’s post. The brilliant writer and beautiful soul, Andrea Gibson had died that morning.

I’ve never cried for a public figure before. When I say I bawled. And I wasn’t alone. Thousands of comments poured out a shared sense of gratitude and loss. To read these surrounded by flowers was surreal—like a global memorial service, a symbol of the interconnectivity Andrea so poetically described.

Andrea’s words were there for me at a time when I felt both brutally disconnected and raw to the world, simultaneously. I was fighting everyone just to be acknowledged and understood. Doctors said there was nothing wrong with me. My family didn’t know what to do with me. My job required so many things of me. I knew the path I was on wasn’t sustainable but didn’t know how to stop, how to ask for help, how to put myself first. When I finally collapsed into severe chronic illness, Andrea’s perspective was a light in the darkness. They made me feel like I could be myself, whether that was a caterpillar inside its chrysalis, a butterfly just getting the hang of its wings, or a boyish ladybug, like them. They helped me learn to love myself as I am.

They posted this absolute revelation in January 2024, and I listened to it over and over. “You, are the best thing, that has ever happened, to you.” Imagine if that could be true? I’d recently been laid off from my hard-earned role as a Creative Director, and I felt equal parts lost and free. I remember excitedly telling Dave, I want to do this!

I gave serious thought to how I would court myself, which I now understand to be a reflection on what matters to me. (I’d present a pebble to remind myself of the bay where I grew up, and shakily read a handwritten poem, in case you were wondering.) Paying attention to those things was a sign that I do, in fact, matter to me. Andrea not only inspired me to write, but helped me realize I was worth writing about. I started drafting my first personal essay the next month, and shared it here in May.

I was digging through my saved posts recently, and came across another gem from last August, Andrea’s last August in human form:

This was over two years into my Long COVID, and four months into My Long Pause on Substack and Instagram. I had many tools to manage my condition and, some days were still really really hard. This post resonated and broke me open—Andrea’s idea of imagining they were lessening the pain for someone else through their experience. It’s one of the many things they’ve said that have helped melt the iceberg around my heart and gently orient it back towards compassion.

When life is hard and painful, and I can’t feel the light, I try to imagine all of us connected by the thread of existence. I think that thread is love.

“Rooting for each others’ joy, longing for each other to thrive. It’s what I cherish most about this existence, the love that connects us. The care that we have for each other. To me that’s the main reason why the world is worth saving.”

—Andrea Gibson, August 13, 1975 - July 14, 2025

Sending a thank you into the ether,
Lisa

We’re all familiar with the line “you can’t always get what you want” by the Stones. Many of us are living it right now, unable to get the bare minimum (jobs, health insurance, a sense of safety in our bodies, and so on).

But what about the things we need that are accessible to us, but we resist?

For me, that need has always been rest.

Thanks to Long COVID, I’ve gotten better at identifying when I need to do less, sooner. If I don’t honor that inner knowing, I get signals from my body like eye pressure, brain fog, migraine, joint pain, and gut issues, followed by persistent fatigue. You’d think with messages like that, listening would come easy! But after a year of gaining back capacity, it’s paradoxically painful for me to accept. It’s like the roar of approaching the finish line after a rough race—I just want it to be over. I want to push the rest of the way. But that’s how I got here in the first place.

My mind swirls with thoughts pointing to frustration and fear. Last week, I jotted them all down in my sketchbook to make sure my inner self felt heard. As I got everything out of my head and onto paper, the deeper feeling that arose was sadness. I asked myself, “why would I feel sad that I can’t do a few errands today? Rest is nice!”

Well for one, it reminds me of last year, when my dips would last for weeks, or months. (Totally valid.)

And how will I feel like I did a good job today if I didn’t “do” anything? There it is. By giving myself space to work through my thoughts and emotions, I identify a belief that is not mine. Even after all this time, I believe that I have to do to be good.

I know that rest is productive. I know that rest is helping me heal and do more in the long term—for myself, my purpose, and my people. So I reorient myself towards what I know, instead of what I’ve been conditioned to believe. This process isn’t immediate (far from it!)—it’s a practice. I come home to myself again and again. It’s the most important work I’ve ever done.

To bring it full circle, “if you try sometimes, you might just find, you get what you need.”

This reflection reminded me of a poem I wrote in April of last year:

Rest, love -
You don’t always need to be thinking something
Doing something
For someone
To someone
For yourself
To yourself
Every act a grain of sand
In a growing pile.
You can simply stay still
Against the relentless passing of time
And every now and then
Let the wind blow you apart
And then start again.

If you find yourself needing a little reminder, feel free to grab this background for your phone. It comes with alll the love and hugs. x

Thank you, as always, for being here,
Lisa

It deserves its own post, which I hope to get to soon. For now, I’ll just say it’s unblocked something in me, and I feel myself able to make art in more ways, much more often. And that art will start to be a part of the way I share my story here.

Each week following the class, “keep painting!” has been on my list of “high priorities” (after rest, calories, and lots of water). It’s not about achievement or “discipline”—it’s a reminder to keep filling my soul. But the state of the world, the planet (hello, heat wave), and my body have been actively uninspiring lately.

Since art therapy costs me very few spoons (I’d go so far as to say it gives me spoons at this point), I turned to licensed art therapist, Emily Sharp’s Guided Art Therapy Card Deck, which had been patiently waiting on the shelf since 2023.

Card #3 in the deck reads:

“Draw two partially overlapping circles with a pencil or pen. The left circle represents the past, the right circle represents the future, and the middle is the present. Use colors, shapes, textures, and words to describe each category. Beneath the present section, write things that you are doing now to reach your future state.”

Scroll on to see where I went with it, or go off on your own to try the prompt. If you do, please feel free to send a pic my way! I’d love to hold space for your experience.

I sketched out my Venn diagram and, almost automatically, started painting waves. I live minutes from the beach, and the ocean resonates with me as a metaphor not only for life, but for consciousness. (You are not the waves, you are the whole ocean).

It felt too straightforward to make my past dark, my future light, and the present something in between. Like, yes—and. Some of my most heartbreaking moments paved the way for my deepest insights and joys. The story is in the details:

• The way the waves can feel so immovable, they’re more like mountains.

• The bolt of spirit I felt in the beginning of my most severe crash, and the love that held me through it all.

• The tiny joys and support that buoyed me in the storm.

• And the vessel I’ve been clinging to slowly fading away, heading towards a space where I am more than my illness, my body, or my history.

I wrote a few poems to pair with my painting:

The Past

The past felt permanent.
Waves solid and steep—
Mountains, really.
My soul grew heavy, waiting
Inside a shell sharp enough to cut.
The only way out was through the rock.
One day, after crawling to the shower
I had a thought burst through the storm
As if to illuminate the entire sky:
“It’s going to get harder, but you will heal.”
I was carried on a flood of love.

The Present

I feel my edges soften.
Like ice caps becoming water,
I learn to live in flow.
I don’t know where I’m going,
But where I’m going, I will go.

The Future

I am not the waves
And I am not the one who rides them.
I am the ocean, the sky, the sun—
There is no destination but to glow.

Thank you, as always, for being here.
Lisa

This March, I felt well enough (emphasis on the enough) to take a city-bound train and village-bound N-train to SRFF NY, the Socially Relevant Film Festival. Dave and I met up with my family to see Olas de Recuerdo (Memories of Salt), a documentary directed and edited by my second cousin, Naomi Garcia Pasmanick.

Memories of Salt tells the story of our extended family in Galicia during the Spanish Civil War. According to the United States Holocaust Memorial Museum, “the Spanish Civil War (1936–39) was the bloodiest conflict western Europe had experienced since the end of World War I in 1918. It was the breeding ground for mass atrocities. About 200,000 people died as the result of systematic killings, mob violence, torture, or other brutalities.” Our family emigrated to New York after enduring hunger, persecution, and loss while resisting fascism under Franco. It’s a heavy, timely topic. I find it unimaginable that this could have happened in my grandparents’ lifetime, and even more so that history seems to be repeating itself around the world today.

Growing up, our family’s history was never offered freely. While other families were like an open book, ours seemed to be shut and stored away forever. I always chalked it up to the multiple language barriers, with my abuelos still speaking mostly Gallego, my mom retaining enough Spanish to facilitate less complicated conversation, and my intermediate-level Spanish rarely jumping off the page and into my mouth—even then, it was usually reserved for shaky school exams. When my abuela was still with us, my very non-Spanish-speaking dad would talk to her in gibberish to make her laugh (laugh is a strong word, it was more of a husky chuckle).

Once, my abuela fondly suggested that my braided hair and buttoned collar looked “prewar”—“she means the Civil War,” my mom clarified. “Thank you, that’s basically what I’m going for,” I joked, not knowing how to dig any deeper.

I presented my abuelos with an Empanada Gallega, a savory pie the size of a sheet pan, for their 66th anniversary (yeah, wow). I had diligently learned the recipe while spending a week with our family in the traditional fishing village of Moaña. My Americanized attempt was filled with stewed peppers, onions, and canned tuna—a far cry from my abuela’s famous cooked cod or the mejillones of their village. She deadpanned “a little dry” (so that’s where I get my sense of humor from) and finished her serving. Her clean plate was less of a compliment and more of a sign that she loved me and was proud of me. These things transcended the language barrier.

Through Naomi’s documentary, I gained more context around our generational disconnect. Their traumas were too great to speak about, let alone translate. To quote Pope Leo XIV, “war does not solve problems; on the contrary, it amplifies them and inflicts deep wounds on the history of peoples, which take generations to heal. No armed victory can compensate for the pain of mothers, the fear of children, or stolen futures.”

The violence and public humiliation our family faced was enough for them to leave their home country and start over. Our great grandmother came to the US with her twin daughters—her two young sons (who would be my abuelo and great uncle) were to follow later. They survived and moved forward for the next generation. As is the case with many immigrant families, my abuelos expected their four children to attend top universities, each on a full ride. Our great uncle Pep, who never started a family of his own, left his life’s savings to us grandkids to further our education and futures.

Uncle Pep’s last gift changed the course of my life. I was able to make a modest down payment on a studio apartment in the up-and-coming neighborhood of Ditmas Park, Brooklyn. I reconnected with the man I considered to be my “twin flame,” who, as “fate” would have it, also wound up in that neighborhood. We got married, and I experienced some of the highest highs and lowest lows of my life. While my family had done their best to move on from the hardship they experienced, and spare us from anything close to that kind of life, my choices evidenced a reverberating impact through time, and set me up to heal things I hadn’t even realized were a part of me.

Part of my recovery from PTSD and severe Long COVID has involved addressing generational trauma, the effects of my family’s hardship encoded into my DNA. Through life-changing energy work with a dear friend, I’ve been able to access a softness that feels new not only to my body, but my family line. While Naomi was in the process of making Memories of Salt, I also experienced a moment of connection with the past. In a deep meditative state, I had a vision of Uncle Pep standing in my doorway, chains draped over his outstretched arms. I could feel that we shared deep-seated beliefs of scarcity and unworthiness. I expressed my heartfelt gratitude to him, tears streaming down my face, and released the burden of his experiences, for both of us. I hope wherever he is now, he’s lighter, like I am.

After the film festival concluded, I did my best to feel Spring’s sunshine on my face, exchange warm greetings with Naomi and other family members, and taste the pleasant heat of a fresh ginger-turmeric tea at lunch. I tried to be in the present moment, and focus on the life I’m lucky to have been given, by the grace of courageous relatives I’ll never have the opportunity to know.

But like all great art, Naomi’s film stuck in my gut and refused to let go. I reflected on my disconnect from injustices around the world, how little I’ve actually done in comparison to how much I feel. How the path I took to become “worthy” helped nobody at all—not people desperately in need, not my parents whose guidance I resented, and most certainly not my body, which ultimately kept the score. Before I carried Long COVID like a cage around my chest, I carried a heavy sense of inauthenticity, as if each step I took led me down a path parallel to the one I was supposed to be on.

The further I got in life, the further I felt from discovering my purpose. I wound up “stuck” in a career that wasn’t my calling, that took up all my time and left little energy to question the status quo. The COVID-19 lockdown and racial reckoning of 2020 was a brutal awakening. I realized I was on the privileged side, the White side. Wasn’t that why my family left Spain, so we could have a chance at a better life? Still, what was I doing to help others get their chance at the “American Dream?” Had I been feeling my separation from our roots of resistance all along?

As Dave and I meandered away from my family at the cinema, he discretely and delicately supported the weight of my body and whirring mind. I pulled up an app to figure out which train would take us back to the lovely Long Island home I bought with my life’s savings, including that fateful gift from my great uncle Pep over a decade ago. But even simple logistics were too much to handle after six back to back, thought-provoking films. Despite my best efforts to “calm down,” I felt the pressure and frustration building. I became furious at myself. My broken brain. My combination of privilege, passivity, and powerlessness.

I started reverting back to my old ways, weaving in and out of cheerful tourists, pulling Dave towards the train we “had” to make to get home at the “right” time. My body protested. I didn’t care. I finally collapsed into my seat on the train, unable to eat the vegan cookies we had joyfully bought for the ride home. I was exhausted, and nauseous, and enraged, and sad, and wow, feeling things. Hey self, remember last year when we couldn’t feel things? When we didn’t know how to channel that into writing?

I opened my notes app and realized for all my fatigue, I had plenty to say. Here’s what I wrote. It’s a heavy, timely topic.

Imagine…

You’re riding a train through the history of your life, each scene passing by in the window. You take your first breath and let out your first cry. You’re passed around at parties, making people smile. You learn to roll, and sit, and walk, and talk, and sing, and make music, and dance. The train starts to move faster—you’re in preschool, first grade, and then before you know it, sixth. Classes, books, teachers, friends, sports, activities. First kiss, first breakup, graduation, college—that whole thing’s a blur. First job, first promotion, first apartment you actually like, hours of commuting, years of excitement and drudgery spiral off in a dizzying helix. Maybe a marriage, kids growing up like you once did.

Then, BAM. Train stalls.

There’s a delay—no, full stop. Something’s broken down. You’ve broken down. You look around, seeking reassurance. The florescent lights overhead only burn your eyes. There’s no announcement, no information. Hubristic posters at the front of the car read, “Everything’s Fine!” and “It’s All In Your Head!” A conductor rushes by, and you murmur, how long will we be here? You meant to yell after them. You meant to follow them to the next car. But you’re suddenly feeling impossibly heavy—could you be coming down with the flu?—it’s been a long day, one of many.

The first few days, of course, you feel that you must get the hell off this train. You’d try just about anything—you’ll fix the damn train yourself! You have places to be, people to see. But weeks pass on the stalled train, months, even years. Are there really only 365 days in a year? Every hour feels like a day. That’s 8,760 “days.” Days of silence, days of panic, days of claustrophobia, days of raging, days of bargaining, days of sobbing, days of acceptance, days drowsily spent watching the birds flitting outside your streaked window. Life isn’t so bad really, when there are birds.

Will you ever feel free again?

Some days you literally itch with impatience. If the train would just move an inch, you might have some hope. Can you even remember what hope feels like? Other days, the train rolls a few feet, and you rejoice. Forward motion! Never mind that the film of your life is grinding in place on rusted gears. Never mind your hunger for things not on the train, like chocolate, coffee, friends, exercise, and “normal” life experiences.

Finding joy in the now helps with the waiting. You’re still alive, and it’s not nothing. There’s meditation music, and podcasts, and audiobooks, and squirrels, and trees inosculating, though opening your heart to them also makes you vulnerable to the larger moments you’ve missed, and are still missing. You try numbness—it protects you, but dims your eyes and spirit.

Most days you’re lonely to your bones. Being on the train is all you have to talk about, but you can’t talk about being on the train. When you call your loved ones, they don’t want to talk about the train. They want to talk about things that mattered before the train, before you became the person you are now, a person stuck on the train. The conductor makes routine announcements from the safety of his caboose, mostly avoiding the state of the train.

When you finally connect with other passengers, all they want to talk about is the train. At first, this is validating—but after a while it only makes you feel more exhausted, the acknowledgment and reality of your shared situation. Hearing their stories makes it that much more real, and terrifies you all over again. The realization and grief washes over you. You’re at the end of the line. At least for now. We’re hoping a bus comes along at the next stop.

This past year, I’ve done everything in my power to heal physically, mentally, and emotionally from Long COVID, and I’m still not better, better. I’m grateful for the lessons I’ve learned and the milestones I’ve reached. But with all of my work and privilege, I still can’t hop on a bike, go for a jog, carry a basket of laundry up the stairs, or work a full day at my laptop. These things I took for granted all my life, doing day after day after day, I can’t do once without consequences.

The day after I got back from the city, coming down hard, I realized it was Long COVID Awareness Day (March 15th—mark your calendars for next year!). And so I committed to posting this when my capacity allowed. Millions of people are still not better. I refuse to be quiet about it when what we need is awareness, research, and funding. I may have found one of the causes of my lifetime, better late than never.

Earlier, I wrote that I’ll never know my relatives who bravely stood by their beliefs nearly a century ago. I take that back, as I begin to know myself and what I stand for. They’re in my blood, my bones, my tears—the salt. I hope I make them proud, my way.

Thank you for being here,
Lisa

In 2019, after four tumultuous years of marriage, my ex-husband and I separated. Our union turned out to be less “fated,” more fatal. I was conditioned to believe the fission was entirely my fault, and pushed myself to the limit day and night to cope.

While pouring gasoline on the fire that is PTSD doesn’t play out so well for our health, it works great as far as capitalism is concerned. I rose in the ranks at work and started to be invited into “the room where it happens.” (It was a food company, so I quite literally learned how the sausage gets made.)

I was also typically nursing an intense hangover from trying to keep up with my wonderfully wild, ride-or-die group of friends. It was like a daily support group, with copious amounts of booze and escapism. We even had our own highly exclusive Slack channel. I remember when my cousin met them at my 30th birthday party, she said something along the lines of, “you’re obsessed with each other. It’s not healthy.” Though lacking tact, in retrospect she wasn’t completely wrong.

Fraying at the seams from a marriage I had thought would complete me, I would do anything to feel part of something again. Come nightfall, I’d swap out my shiny overachiever mask for concert clothes and smudged eyeliner, like an emo werewolf ready to take on the city that never sleeps. I’d howl my broken heart out until two, three, four (!) in the morning and get rocked to sleep by the subway ride back to Brooklyn. There were impromptu visits to Coney Island—the end of the line—more often than I’d like to admit. The train felt safer than home, I realize as I write this.

The night my ex-husband officially relocated to his friend’s couch, I wailed along with Phoebe Bridgers to ‘My City’ at Brooklyn Steel (“Risk it all on a game of chance / Chasin’ love like an aaambulaaance!”). I had a lingering cough, a 101 fever, and a gum graft scheduled for the next day. The tragic irony is clear to me now, as I try to love myself into relief (and dare I say, recovery) from my Long COVID rollercoaster.

Back then, life was a tilt-a-whirl of work and play. Emotions ran higher than me and my friends on edibles at the Korean spa on a Sunday. I poured my most unruly feelings into poetry, and the rest spilled over into daily life, making everything feel technicolor and raw. I want to apologize to anyone I body checked on the streets of NY (who in the actual world was I?)—life was tough and I tried to be tougher.

Recently, after a particularly fitful night of “sleep,” my best guy friend from that era visited me in a dream. The guy friend who gave me piggyback rides between bars. The guy friend I drunkenly hugged like it would keep me from falling apart, for real. The guy friend my work wife threatened to “beat with a stick” if he didn’t make his intentions clear. It was bittersweet to see him again. Heartbreak has a way of resurfacing until we figure out how to feel it, and release the person it’s tied to.

He was my most lighthearted pal. He’d regularly yell “PROUD OF YOU!” to friends and strangers alike. For dumb stuff too. It always got a smile. I was a hypervigilant introvert and crushed on his way of disarming people, myself included. He worked in sales but wasn’t your typical alpha type. We shared a love of emo and post-hardcore bands and would duet Taking Back Sunday at karaoke. The rim of his baseball cap smelled like summer in Manhattan (iykyk). I huffed it once (ah, love) and swear I would have gotten sick in the middle of the crosswalk, if I didn’t have emetophobia.

Drinking with him was like undressing. Each ounce stripped away the niceties and brought us closer to an underlying truth. I opened up to him about what had really happened in my marriage. He texted me Radiohead’s “House of Cards” one night to, I don’t know, torture me? Seriously, don’t hit play unless you’re prepared to feel something. Then we’d be sober again, back to friends, which I appreciated just as much as anything else. And yet, it confusing as hell (I assume for both of us).

After a romcom level of back and forth, we finally found ourselves sharing a cab and the make-out sesh an audience waits for. We skipped his stop. I pushed him up against the faux green marble of my building’s elevator.

As his hands lifted my dress, I remembered I was at the tail-end of my period. I remembered my apartment was full of trash bags and regret. I remembered my shame. I sent him—and us—back to where we had come from.

He wound up with our mutual friend not too long after. She held her whiskey better anyway. I tried to hold on to our friendship leading into the pandemic, but a bridge had been burned. The two of them drifted away to a world where only they existed. I stopped expecting songs and initiating text conversations. Neither of us has made the effort to reach out since. I think it was the first time I internalized that people we care about can just…vanish. Take a different path. Never to be heard from again.

Five years and a dream later, I took the time to grieve our friendship and the brief, unrequited (?) love (??) affair that transpired. I gently uncovered the wound I had neglected while tending to so many others. While it stung, I realized our connection had been life affirming, a spark in my dark night of the soul.

There’s a quote that comes to mind: "You're not healing to be able to handle trauma. You're used to trauma. You're healing to be able to handle joy." Maybe the detour with my friend was a sign that I was heading in the right direction, realizing I deserved more.

Emotions running high, I turned to poetry:

the things i cannot say

i’m happy and hopeful lately
though i did dream of you, and i
can’t catch my breath
the whole day after
my chest heavy with how i try
to hold you in my mind

i’m sorry i hid my feelings
but you left riddles like a liar
i didn’t think that you could love me
but dirt needs a forest fire
i know it would make you sad
it makes me sad.

remember when we were reckless?
soaking with well whiskey
throwback emo karaoke
anthems and anticipation
the night you kissed me

thank you for holding my pieces
though they didn’t fit like hers
everything’s changed now, for the better
and rarely for the worse
i know it would make you glad
it makes me glad.

Thank you for bearing witness as I unearth previously hidden parts of my psyche (meep!) while learning how to live my best life with Long COVID and ME/CFS.

Proud of you!
Lisa

Whew, it’s been a while! Two months to be exact. My newsletter continues to be energy dependent, but I’m basically a walking, talking solar panel and look forward to sharing more musings this Spring. I have a couple drafts waiting in the wings—one is about letting go with love, and the other is a ten-minute read on my extended family history and Long COVID. I’m holding myself accountable, with love, of course.

In the words of this beautiful note (thank you, ), I’ve been feeling the need to throw open the shutters of my heart and appreciate what’s in front of me.

So here’s something a little different today. A quick thing that came to me this morning. I’m going to let it see the light of day. I’d love to hear what you think.

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Most mornings, I sit down with my sketchbook and a pack of markers. I pick the colors my eyes are drawn to that day. This morning, it’s teal and hot pink. Oh come on, I think to myself, what are you, a kid picking out braces?

omg omg YES i am a kid picking out rubber bands for my braces. i am a kid wearing 90s fashion, the first time. denim skirt and rainbow knee high socks and kelly green converse. green is my favorite color, but the dentist says i’ll look like i have food stuck in my teeth.

Is this what people mean when they say they feel safe enough to wear pink? I am safe enough to be “childish,” uncomplicated. The opposite of elevated. Honest.

i am safe enough to swing in the backyard and sing my heart will go on and ON, my head thrown back to the sky. the air smells like dandelions. i refuse to pick them. who said lawns had to be neat and tidy? probably the same people who said i did.

I am safe. Oh boy am I safe. I’m uneven and unkempt. My hair tickles my hips and has five inches of dead ends. I cancelled my hair appointment this week. I’m getting over a cold and decided to rest. I decided to notice the way the light beams through the blinds and checkers my cat’s fur.

There’s always next month.