Glug glug glug — the yellow slime slithered over the rim of the glass and down my reluctant throat… There was no pause to breathe. If you didn’t get it down, it turned to grainy jello. Then rubbery cement which took serious scrubbing to clean out.

Scrubbing I didn’t have the strength for anymore.

So I kept glug glugging…

I imagine a sour-minded friend — a “frenemy?” — offering his comments.

I’ll call him Dan.

Why would you subject yourself to this misery twice a day? Are you a masochist or something?

No Dan. I did it because it was Winter 2008, and in the three months previous, chronic fatigue syndrome (known as ME/CFS) had pancaked my life and left me desperate for relief. This obscure Korean herbal glop was the only thing keeping me upright and able to work.

Unbeknownst to me at the time, I was embarking on a journey to hell and back. A journey which took me to and beyond the edges of my capacity to suffer. A journey that transformed my mind and heart.

And as a dedicated Tibetan Buddhist who had received a top notch education and practices from some of great modern Buddhist masters, a journey which made the teaching of the dharma entirely (too?) real.

Life hasn’t been cushy before. Or I didn’t think it was. I’d been getting the flu once a month for the previous 5 years, affecting my ability to work. A previous design business failed, and even when I worked 60 straight 12hr days in a row trying, I didn’t get the nice regular jobs I applied for. At one point, I worked two full time jobs — including construction in the Winter — while always at the edge of getting sick. I’d just gotten through a painful divorce which split our friend group. My bank account was empty at the end of every month. I was broke — or so I perceived myself, as someone who still owned a 4 bedroom house…

Then the 2008 collapse hit. I was paying $500/month out of pocket for the yellow glop, which was my only way to have enough energy to try and rebuild a business. My furnace died that rainy cold fall and I was out of credit cards to pay $5000 for a new one…

I couldn’t even wear a sweater and tough it out — I was renting out rooms to try and cover bills. So the house had to go. At the bottom of the recession, I sold it for $80,000 less than it had been worth just a year before.

Oh how I felt at my limit right at that time in my life!

And oh how mild — even fun! — this would all seem 7-8 years down the line! This ‘nightmare’ I was living would later truly seem like a vacation.

In those years that followed, life got much darker. Much starker. More filled with challenges. And on a scale I couldn’t have possibly imagined.

The glop kept working, allowing me to work 7 days a week!

Until it stopped working.

This is a pattern I would repeat with endless remedies that worked for my chronic fatigue…

And then didn’t.

Tibetan herbs from a monastery at 15,000ft in the Himalaya… Chinese herbs… Stacks of Naturopathic pills… Experimental pharmaceuticals… Shots of alternative German medicines… Special diets (probably five that worked… And then stopped working)…

Hah! I told you so. You should have seen a proper doctor.

I did, Dan. I did. Western medicine? God bless it, despite endless blood tests from multiple physicians, rheumatologists, infectious disease specialists… It never even offered anything.

Except antidepressants. (“I know what it’s like to be depressed. I’m not actually depressed now.” The physicians would look at me with such pity. Poor guy doesn’t even know he’s feeling bad…)

Who knows why an effective remedy stops working? Without anyone being able to tell you anything, stuff just…happens. Without a story. When things would fail, I was back to laying on the couch for weeks and sometimes months. Waiting… Go to sleep tired. Wake up exhausted. And even when I felt well, I’d be going along doing my thing and then… I could barely stand up.

Did someone do something to the gravity?? It really seems like someone TURNED THE GRAVITY WAY UP. 

Did you ever consider you’re just being lazy? I mean, lots of us feel tired and we still have get through our day.

Dan… Gravity had been my friend. Before my health begin to collapse, I’d been a pretty decent rock climber (.13c/V10). Struggling against gravity at my absolute limit — sometimes for days at a time on Yosemite’s famous El Capitan — was something I’d spent 23 years doing. For fun.

Exhaustion was delightful then, and I often reveled in how “worked” I felt at the end of a hard day.

But now… Just reaching up for the shampoo in the shower seemed so hard. Much harder than “exhaustion” used to. It was as hard as solid climbing, and I would talk to myself in my mind like my climber buddies used to when I was hanging upside down, 800ft up, grunting.

Hang with it, bro… You’ve got this shower… Stay with it… Just 30… More… Seconds…

And the difference between the old exhaustion and this kind? The old kind used to end. A few days of rest and you’d be chomping at the bit to do more!

This kind? It went on and on and on…

And my mind…

I could think all day long. For whatever reason, my higher cognitive faculties were intact. Almost sharper, actually. (Not true for everyone with CFS.) And I could speak such that people listening didn’t even know I was sick unless they looked carefully into my eyes. I could teach the Buddhist classes I was assigned without a hitch, sometimes three days a week — being one of the main teachers at my local Meditation Center. I would have to hold myself upright in the teaching chair, but the words could keep flowing miraculously out of my mouth…

But coming up with a curriculum? It wasn’t even an option. Like many with chronic fatigue, the details and minutiae were like my yellow glop. If I didn’t get through them in a minute or two, they set up in my brain and turned to jello. And this viscous mix would seize up the gears of my energy and leave me gasping.

This was the case with all pragmatic tasks, like booking plane tickets or figuring out which direction to walk in the grocery store to get the things I wanted… With higher brain functions intact, I could intellectualize all day long. I could sit through the work meetings — and even enthusiastically lead them! — generating many worthwhile ideas of the next steps to take.

You’re complaining, but it sounds like you were pretty functional…

Dan, listen to me… Could I do any of those next steps?

Only with the most extreme effort possible.

So these lively meetings ended up being a weird torture: I’d just invented 10 more ways in which I was failing to keep my life together.

And to this writer, the real kicker was that… I could no longer write. It would take me 25 minutes to compose a four-sentence email. Me — with a fancy MFA in creative nonfiction writing from the world-famous University of Iowa! I’d just spent 10 years working on a book project, where I wrote for hours, night after night, ending up high as a kite just from immersing myself in my art…

Now? There would be 5-6 embarrassing mistakes per paragraph. The “brain fog” of CFS melted one of my core abilities — being able to translate my thoughts into the written word.

How does Buddhism tie into this rambling story…?

Hang with me, Dan. We’re getting there.

I could go on and on. The severe migraines which left me wearing sunglasses in the dark… The endless list of common foods that destroyed me… Trying to do your taxes when your eyes were halfway crossed with fatigue…?

Ahem.

Dan, I said I could go on.

But why tell you more tangible details? The symptoms… The money…

That’s just surface.

The real depths of suffering around chronic fatigue are the ones nobody talks about.

The intangible mental and emotional agony.

Oh boy… Here we go…

Being locked in solitary confinement would be awful, right? And without even committing a crime, it would be worse.

But even there, one might at least have a sentence. 4 years… 8 years… 12 years…

You might even know when your parole hearings were, and be able to plan for them.

But with chronic fatigue, there is no schedule. No sentence. No parole hearings.

Any day, month, year, you have no idea what is coming next.

“I feel good today!“

And then you ask yourself, “Will it last 10 minutes…? 10 hours…? 10 weeks…? 10 months…?”

Being so negative isn’t helping. Want to know your problem? You keep thinking you’re going to get sick again, and so you do! It’s a self-fulfilling prophecy…

Dan, I’ve met so many people who hold a kind of quasi-religious view that if you keep a thought in your mind that your symptoms will lift, they will. That you will “manifest” health.

Nice folks… Some of my friends who I love dearly…

But when for the 100th time you were 100% sure you were cured, and you were over the moon with joy, feeling great for 6 weeks or 3 months or 7 months(!!!)…

And then…

You feel that draining sensation that tells you you’re sliding back down into fatigue…?

That 101st time…?

You begin to let go of nice ideas and hold a more nuanced view of how reality works.

I’m telling you, if you just believe it’s true, it becomes reality. I do it all the time!

Dan, your life is simple and predictable. You “manifest” theater tickets or a new gardener or a cheap flight to Barcelona. You manifest a raise so you can remodel the kitchen. Sweetly scolding those struggling with more serious problems about their “negative thinking” isn’t educating them. It’s continuing to mis-educate yourself.

You’re a Buddhist! Jeez, man. I’m just talking about karma just like the Buddha taught.

Yes — like Dan, some of the folks saying these things in my life were Buddhists. I tried to counter their beliefs. The Buddha did not actually say such things. The Abhidharma teachings on karma did not suggest that a thought I’m having now will produce a result — not in this lifetime. The Buddhist teachings on karma are so much less simplistic and linear than the cartoon-ized Westernized versions that are passed around in spiritual circles. Western culture has not surprisingly projected upon “karma” a kind of Judeo-Christian moralist judgment, where ye are judged for thy sins.

But I digress… The point isn’t what the Buddha said, but what my friends held as a deeply unconscious bias.

And it’s as old as time.

That if you were sick, you kind of did something to deserve it. I quizzed one Buddhist friend who lectured me on this topic: would she feel the same way about cancer? Yes she would. I didn’t want to ask if rape, war, famine and infants with parasites in their eyeballs would fit into the same framework…

Alas… These views are just a deep and ancient form of human psychological compensation: anything painful in life can be ENTIRELY UNDER MY CONTROL. I MYSELF AM LIKE A GOD.

But my dears… This just isn’t true. And my life was schooling me on it in a huge way. We are vulnerable. And the powerful spiritual lessons in life aren’t actually about how you can get your ducks in a row under every circumstances. (“Even a one-legged child sex slave in Bangalore can grow up to be the President of the United States!”)

The real spiritual lessons are about how to live in this real world with every bit of us exposed to circumstances far beyond our comprehension or imagination.

But these real, deep spiritual lessons have mostly been rejected.

And so too… The experience of people like myself, whose very lives challenge those beliefs.

No Dan. The millions of Jews in the Nazi death camps weren’t just ‘being negative.’

And neither were people who had an illness nobody understands and who most of the time can’t find relief no matter how hard they try.

That’s the thing…

It’s not a side note. It’s the thing, in many ways.

To be in a circumstance like this was a window into the many kinds of suffering that few have compassion for.

The types of suffering that can’t be put into a nice neat box.

Do you know about the history of Multiple Sclerosis? Before they invented the scans to show the nerve degradation, one name it was given was hysterical paralysis.

It was a “mental illness.”

Think of it. You’ve got MS — so hard, right? Now… Nobody believes you. MS isn’t a real illness. Further, they think you’re making up your symptoms. Shaking and losing your balance on purpose.

Numbers of real humans with MS got put into mental asylums where they were literally hosed down with cold water and given electroshock therapy to help them give up the thought that they were sick (adding literal torture to the metaphorical torture).

And the faithful medical staff kept doing it? They thought they were “helping.”

No.

Joke.

But… I understand how this happens. Those with chronic fatigue have faced the same. One 14yo girl in Denmark was famously ripped from her parents by their cushy healthcare system and locked away in a mental asylum for three years.

And this wasn’t 1957. This happened in the last 10 years.

Did it help her?

Of course not.

They just spit her out at the end. So sorry for your inconvenience…

That living nightmare of that poor girl haunts me…

You see… To have an experience like this is to be utterly alone, and almost completely without allies. Many family, friends, people I dated… They mostly couldn’t connect, and nothing was pushing them to try.

Nothing had given them clear permission to have compassion. And so they just…

Didn’t.

I remember one Buddhist leader from New York who called me up one day. I was excited to think someone was checking in on me! I’d been housebound most of a year at that point without nearly anyone calling to ask how things were going. Now my phone was ringing!

But she wasn’t calling to check in. Or ask if I needed any support.

She was calling to chide me for spending so much time on facebook. It wasn’t “becoming” for a Buddhist teacher. And especially because I’d begun talking about my health journey on there, which she felt was “egoic” and “attention seeking.”

Funny enough, she wasn’t on social media. But she had “been told.” Word was going around, and perhaps she was tapped by a team to call and rein me in…

Is it becoming for a Buddhist teacher to admit he was pissed?

Because I was.

And I told her I thought it wasn’t becoming for a Buddhist leader to launch in with criticism when she hadn’t even asked how I was doing — at least not more than once in a number of years. This despite working closely together, including asking me volunteer again and again, week after week, when I was working 7 days a week without enough money to live, and never once pausing to ask if it might be a lot to handle in my circumstances or if I needed someone to drop off a casserole.

I tell this story…

I could tell 1000 others.

Chronic fatigue is deeply insulting.

But it goes beyond not being cared for or understood. It also relates to losing your identity.

Losing your identity? Isn’t that what a Buddhist is trying to do?

Oh Dan… The answer is a profound no…

And a profound yes, but that comes much much later…

Imagine right now the things you identify your life and personality with. Maybe you’re quick witted. Maybe you love dancing tango. Maybe you like to fish. Or you have a great memory. Or your toddlers love wrestling with you on the floor. Or your friends admire your elaborate garden.

Or, because I live in America: your boss says you do great work, or you made a decent living, owned a house, etc…

Now imagine all that was gone. No tango. No garden. No boss. Nobody to joke to. Fuzzy memories. House gone…

Your toddlers growing up looking over at you on the couch, sighing quietly because it’s the 22nd month in a row like that and they know nothing fun is happening today…

So then…

Who even are you?

Who was I?

With no more rock climbing. No more hours spent high on writing. Nor could I read more than 2-3 paragraphs at a time before brain melt set in. Struggling to just do the basics of my job while working 7 days a week, the extreme schedule made mandatory because I might only have 2-3 productive hours a day —either that, or would feel well(!) and then have to work 12-14hr days, 7 days a week for months at a time… Knowing the whole time that the energy might go away, even for years…

And there was no vibrant group of friends like my raging extrovert-self used to enjoy… No time or energy to show up at the party. And gradually, over the years…

No parties. Few friends…

It’s a weird thing to drag yourself out of bed in the morning, $100k in debt, and yet not have any guarantee of working. And at times, not have the physical strength to do one thing beyond passively consume information.

TV… Internet… Maybe a podcast…

Physically, you feel BAD. Like having a flu bad.

Come on man, flus aren’t that bad… Some of us have to go to work with a flu. 

Flus end, Dan. You cannot begin to imagine one that lasts for 15 years.

And yes, I’ve had mild flus. This wasn’t mild.

8 months into such a phase, I would sometimes get up from the couch and walk around in circles, eyes goggling, muttering to the empty room, I feel so bad… I feel so bad…

But after…

Nothing had changed. I had to just sit down again.

Because there were 9 hours left in the day…

Each one stretching into infinity…

Consume… Sit there. Nobody coming… Nobody calling… Nothing to look forward to…

Just the basic tasks that have to get done. Food. Laundry. Shower…

And this is just another day in this latest flare…

In year number 7…

When would it end?

And: would it end?

Nobody knows and nobody can tell you anything (much).

Go ahead. Try it.

Who are you now, Dan…?

I’ll wait…

…imagining you waiting…

…year after year…

…as if you were having an endless painful dream…

Well THIS is depressing…

Dan my friend, you’re not wrong.

But that’s just the first part. We’re not to the end of the journey yet. Hang with me.

That Buddhist training I received…? It started making more and more sense (in time).

There’s nothing like being left with nothing in order to make sense of nothingness.

That’s a cheap line… 

Ok Dan, I’ll concede that.

But it’s true regardless.

Nothingness — aka the famous teaching of emptiness — isn’t a concept. It’s a kind of endless flow. We are a flow. Life is a flow. And there’s no there there.

That day you had yesterday… Where did it go? Can you be in that exact experience again?

I’m not talking about the memories of it you can cook up in the present moment. That’s a brand new creation. I’m referring to the actual flowing experience that was “yesterday.”

And what was yesterday made up of? The sensation of the wind waiting for the bus. The  pressure of a shoe that doesn’t quite fit? The cerulean blue of the Spring sky?

Or ideas — imagining the future or recalling the past, making plans or recreating a conversation with a new ending…?

Flowing emotions like joy or stress or hesitation..?

Are any of those tangible?

No. They’re just part of the flow. The flow of experience.

And experience just goes and goes and goes. Like a stream you can sit and watch all day long, knowing that if you were superhuman, you could just sit and watch it flow for 1000 years, day and night, day after day…

Or 10,000 years…

Or 100,000 years…

Unceasing…

Like my days…

Getting up in the morning, feeling the sensations I labed as “yucky…”

Were they so tangible, really? Could I turn it around and feel them from the perspective of the flow?

In my Buddhist training, we often talked about going beyond hope and fear. In my chronic fatigued life, this was no joke. My mind would wheel with ideas, both hope-y and fear-y.

Hope: If I could get myself to New York, I could see my Tibetan doctor and he would fix me!

Fear: If I don’t get a solution soon, I’ll be left hiding behind a dumpster shaking in the cold.

Hope: If I do this Buddhist healing practice enough, maybe some angelic spiritual force will come heal me!

Fear: If I don’t get back to my client today, he’ll fire me and ask for the money back…

Hope: If I smile at my neighbor enough when I pass her in the hall, maybe she’ll become a friend and I’ll have an occasional someone to have tea with…

On and on…

How could I possibly relax when around every corner of my day was the next failure and the next new pain?

And….

And then finally…

Answers started to come…

1000 years ago, the famous Tibetan saint Milarepa encountered an old woman who told him sincerely about how scary her thoughts could be. He replied that thoughts were the nature of the mind, the way waves were the nature of the ocean. The key wasn’t to expect that the ocean would be free of waves. Expectations like that was part of what made us suffer — fearing our own true nature. But we needed to know how to properly understand the waves in order not to be frightened by them.

Every competent sailor, or surfer, know that.

And this was true. I was learning how to face my greatest fears — which were all thoughts in my mind and heart (emotions being “heavy thoughts” as Khenpo Choga Rinpoche said once in a talk).

And these weren’t made out of anything solid.

Pop psychology puts it this way, “Having an emotion won’t kill you.” (Though if you think it’s real, you might harm yourself in many ways, both obvious and subtle…)

But I was learning how not to believe all my thoughts.

While still believing in myself.

Ha! See! You’re stuck on your ego and-

Dan, shhhh. Listen now.

I was learning how to stay soft, even when I was in a lot of pain…

I was learning how to relax and let the sensations of groggy discomfort come and go…

And to know in my bones that life includes daily failures, and also daily victories, and that it’s all part of the flow…

Letting go of hopes, and also fears — and still getting things done that need to get done…

Resting when I needed to.

Pushing hard when I had to. (Like running desperately to catch a flight I couldn’t afford to miss!)

I was learning how to live.

Not just with chronic fatigue.

How to live in the flow…

How to be the flow…

And this allowed me to confront the feelings that came up when I heard from the Dans…

The Dans were mostly in my mind — imaginary ideas. Like he is here. I was releasing the torment from my Inner Dan. And seeing how one little comment from the Outer Dans could trigger a deluge of thoughts if I wasn’t paying attention to what Milarepa had said…

That the waves will keep coming…

But if you let yourself become the ocean — even a bit — the waves become just the tickly surface on top…

This crazy life experience I never chose… The one which chose me…

Indeed, swallowed me whole and took me down to the bottom of the vastness of my mind and heart…

It was working…

Thoughts like Who am I…?

I wasn’t dwelling on them anymore.

And the confidence I felt wasn’t based on what I did or didn’t accomplish…

It wasn’t about results…

And yet somehow…

That allowed me to accomplish everything…