I have Myalgic Encephalomyelitis (CFS/ME). 

This means that my mitochondria’s chemical process of producing ATP (which is what gives energy to the body) is liable to break down, sometimes at multiple places. Functionally, it means that, when I’m symptomatic, I suffer from post-exertional malaise – where even very mild physical or mental activity can cause extreme fatigue that doesn’t resolve with rest. For me, it also means that when I’m symptomatic that my muscles get inflamed, it’s difficult to walk, I have a hard time processing information, and I lose speech. 

Symptoms are triggered by lack of sleep, stress, and other illnesses. Flare ups can last for as little as 12 hours, or can turn into relapses that last years. There are treatments that work to different degrees for different people (Vitamin B12 supplements have been helpful for me); but rest is the only treatment which seems to make a difference for most people.

I’ve had CFS/ME since I was ten, with long periods of remission. 

I had a relapse that started about a year and a half go and which is ongoing. I’m also pretty sure that most of you who are reading this had no idea that this was happening.

There’s a good reason for this. It’s called “masking” or “passing”. The person with the invisible illness develops a public persona that allows them to present as able-bodied. This has benefits. It reduces social stigma. It allows them to hold down jobs that would otherwise be unavailable due to prejudice. It allows them to avoid the admiring/condescending pity that so often frames how people relate to those who are differently abled. 

Passing has a cost, sometimes a steep one. Pushing beyond our body’s boundaries can cause other health issues or turn minor flare-ups into long-term relapses. It can lock people in a vicious cycle of public performance followed by private crashes. It also means that every professional or social engagement has an element of performance. The farther the gap between one’s able-bodied performance and one’s actual health – the higher the costs and the greater the risks.

I “pass” regularly. There’s a meeting, a community event, or someone knocks at the door. On a bad day, or even an average day, I have to pause and put on my persona. My gait straightens out, I put an extra charge in my voice, I concentrate, and then I log on, or open the door, and walk in the room and come across as “Ben” – who I’m told, is passionate, enthusiastic, articulate, and positive. The curtain comes down and the crash (small or major) begins. I lay down, sometimes nearly pass out; my words come only stubbornly, my brain is a haze; and hopefully in a little while I start to feel better. 

There are times when this practice is not difficult or not necessary. (I had a three year stretch of good health not too long ago where I gut renovated an entire house, pulling 80-100 hour weeks the final three months to get us in under a tight deadline. There are people my own age who probably couldn’t have pulled that off.) I’ve even had good two to four week stretches over the last couple years where I’ve felt largely able-bodied. However, there are other times when it is grueling, painful, and self-destructive.

This last week, I had an intense flare up. I had rested for a full weekend previously. I still barely managed two days of work and one community chorus rehearsal, and then was bed bound and mute for two and a half days afterwards. I’m back to “passing” levels now, but the last year and a half have been filled with social events declined, family trips cancelled, and almost countless invisible practices to accommodate the limitations of my body. And there are no signs that any of this will simply change in the near future. 

As a family, we are not in the easiest circumstances for me to be sick. We have three young children who need our constant attention and who don’t always sleep through the night. We live in a community where we don’t have the sort of social networks who could be leaned on to provide support over the long-term when my body fails me. We live on an island, which makes travel arduous and complicated, not just because we have three kids; but because I cannot rely on being able to rest when I need to. I’ve simply stopped going to the mainland in most circumstances – because nothing ruins a trip like desperately needing to lie down, but knowing you won’t be able to for a couple more hours because of the boat schedule.

As I enter middle age, I find myself less willing to practice these performative cycles than I did when I was younger. The endless supply of better tomorrows, which are the gift of youth, are running out. I find myself asking the question, “Would I be okay if this was my life when I was sixty?”  Writing this is how I’m trying to say “no” to this question. Materially, it feels like there is very little I can do to change our current circumstances. However, I can narrow the performance gap between my private and public selves which has grown to define my life. There are not actually two me’s – there is just one. I am enthusiastic, articulate, and passionate. I also have a body with very real limitations that require very real accommodations.

I’m not sharing this because I want your sympathy or am begging for your help. I’m sharing because I’m trying to practice a different way of being human: one that does not require me to split myself in two in order to be acceptable. I’m trying to imagine what a full life looks like with an invisible illness, but without performance. We’re trying to figure out what our household needs to navigate there. And this: disclosing to you what happens behind the curtain- is the best way that I know to start.

When one spends all their time home renovating, one has very few opportunities to write about home renovating.

This last year has been a blur of ever-more-frenetic activity, from what feel like the halcyon former days a year ago when this project was “That Demanding Hobby I Do On Weekends” to becoming “The Monster That Has Eaten My Life”, punctuated by daycare closures, career transitions, the loss of an internal organ, (in the words of my son: “So dad: how many internal organs can you lose?”) and the temporary death of one lifelong hobby (I read fewer books this fall than I had literally since I was seven.)

However, it is done, for a given value of done. Our pantry may be bare studs on walls (our mud room likewise.) My office may be bare pieces of sheetrock, waiting to be mudded, taped, and painted, hopefully sometime in the next decade. All but one outlet in my children’s bedroom may not work, on account of serially deciding to do that really inconvenient run from the basement to the outlet tomorrow and then forgetting that I hadn’t done it all. (I discovered this only after a lot of confusion, much rewiring, and some messy sheet rock surgery.) We may not have a railing at the top of our neck-breaking stairs and our future baby’s bedroom is aggressively unfinished. (Oh right! Did I mention we also learned that we were expecting this last fall? Baby due on June 4th!) However: the electricity works (mostly), the plumbing works (but for a pesky drip on the downstairs toilet drain), the house is warm, and approximately 70% of our boxes are unpacked.

And the house came out – beautifully. I’m still in disbelief that I managed to pull this off, considering my utter lack of anything resembling natural talent for home renovation. The people who were most surprised that we took on this project were the ones who knew me the best. There was nothing in my previous life history (but perhaps for a tendency to take on foolhardy, over-ambitious projects) to indicate that renovating a house from the studs out was anymore feasible than me growing wings and flying to the moon.

I was not unaware of this fact either and had grown to believe that every mistake, frustration, or wrong turn was the final, irrevocable proof that I Was Not Cut Out For This. It was only in the haze of this last November, as I was spending another late night mudding a closet, that the realization clicked on like a light switch: I was now legitimately, undeniably good at what I was doing. I could wire an entire house. I could install plumbing, if not without a lot of profanity, then well enough to pass code. I could sheetrock and mud a room as well as I had seen in many houses I had visited. I could paint nearly as well a a house painter. I could learn a skill from scratch and do it as well as the people I could afford to hire to do it for me.  While I would never be a a true artisan, I had developed a mindset and a set of skills that would stay with me for the rest of my life.

I’ve learned that competence is far more important than talent. In a society where we’re supposed to be our own little geniuses, it’s easy to forget that it’s our grind, rather than our gifts, that we can most rely on. I’m still not naturally talented as a home renovator, but I was able to build a hard-won set of skills from my willingness to learn, to fail, to look like an idiot, and then to try again. And because of that, I value this accomplishment more than almost any other.

There’s more stories to tell you about this last year. You haven’t heard yet about my adventures with my heroic father and the Island Trailer, being out until midnight on a lift installing windows, my discovery of the Beatles (half a century late to the party, but goodness, have I arrived!), or being sprayed with raw sewage the night before I moved in. [And yes, there will be more pictures upcoming. Then again, if you want to see the house, all you have to do is stop by.]

But until then – I wanted to let you know: three years and eight days later, we finally moved into our house. And it is wonderful.

Solastalgia: The homesickness you have when you are still at home – when your home environment is changing in ways you find distressing. Coined by Glenn Albrecht, this term is most often used to describe the grief caused when one’s place is forever altered due to environmental degradation or climate change.

I think about Solastalgia as a lifelong mainline Protestant when I brush my son’s teeth.

Michael is five years old, and every night, after we read a book for a continually-renegotiated amount of time, he sits down on top of the toilet seat, cranes his face up at me, and smiles cooperatively while I go about the work of avoiding future dentist bills.

I also use this forty-five or so seconds as an opportunity to give lessons in applied hymnology, as I sing him the beloved songs of my youth in a United Methodist Church.

He’s learned “O For A Thousand Tongues to Sing”, or at least as many of the seventeen verses as I can easily remember. (Incidentally, this was my eight-year-old-self’s favorite hymn, much to the chagrin of the adults who always assumed that “Jesus Loves Me” must be the favorite song of every person under twenty years old.) He’s learned “Lord I Want to Be A Christian” and “Sweet Hour of Prayer”. He’s learned “Amazing Grace” and the even more amazing fact that it can be sung in settings other than funerals. Sometimes he even hums along, as well as a five-year-old can do with his mouth half-open and his father busily doing amateur dental work.

About a month ago, we were performing our normal nighttime ritual, when I suddenly realized, while singing “Holy, Holy, Holy”, that he will never learn to love these hymns which are part of my spiritual bedrock. These songs, which provided the soundtrack for my youth and young adult years, will be forgotten by him and his peers and pass into the mists of curiosity and history. His memories of the songbook of my life, so far as he ever remembers it, will be linked with images of staring up at a bathroom ceiling or with the sleepy dustiness of an almost-empty sanctuary on Sunday morning. The impervious stability which is ostensibly part of the promise of a millenia-old religious tradition, was simply…. not; and I found myself swallowing down the grief that surprised me during one of the most prosaic nighttime routines.

I wonder if you’ve ever experienced such a moment of dislocation in the faith community that you belong to. We go to the place that we call our spiritual home, indeed that many of us have probably called home for much of our lives; and while the sanctuary looks the same as it always has (perhaps eerily so) there’s a sense of weariness. The pews are still lined up in rows, but there are fewer faces in them, and those faces are older than they used to be. The same hymns are sung, but with quieter voices. The traditions: the choirs, the Easter flowers, the Christmas Eve services continue in ever-shrunken capacities; as if slowly returning to the ground from which they came.

In those moments, perhaps you have experienced this intense homesickness for the home of days long gone by: of beloved saints who have passed away, of full sanctuaries and full voices, of a community filled with energy and hope, rather than determined exhaustion. It sometimes feels like we sit amongst the ghosts, who press in on us in those places where once there was life and now there is dust.

It reminds me of the story from Nehemiah, when the exiles return to Israel, and the temple begins to be rebuilt. It says, “All the people gave a great shout of praise to the Lord, because the foundation of the house of the Lord was laid. But many of the older priests and Levites and family heads, who had seen the former temple, wept aloud when they saw the foundation of this temple being laid, while many others shouted for joy. No one could distinguish the sound of the shouts of joy from the sound of weeping, because the people made so much noise.” (Nehemiah 12:11-13)

Perhaps those weeping people were experiencing spiritual solastalgia. They were home but yet not home: recalling what was long past and never coming back; coming to terms with all that was precious that had been lost forever.

I wonder the last time any of us have wept for all that we have lost in our spiritual homes, any more than we have wept for all that we have lost in our planetary home. We live in a culture that denies death and shies from the practice of grief. We live in a culture that is addicted to the solution: that believes that it is our birthright to be the heroes of our own story, that there is always a rabbit ready to be pulled out of the proverbial hat.

It’s easy to see this in climate conversations. We assume ever more frantic can-do attitudes. We invest our faith in increasingly fantastic technological solutions, all of which are either utterly unfeasible or, taken on their own, utterly insufficient for the challenge at hand. We throw ourselves into advocacy work, that, while deeply important, sometimes ignores the fact that the moment that we could have “solved” the climate crisis is past, and the question now is not whether things will get worse, but how much worse they will get. We cannot get our imaginations around the hard fact that this home, which has always been our greatest constant as a species, is now unreliable and will only become more unreliable, no matter what we do at this point; that much of what we love will be lost and already has been lost.

We are not exempt from this dynamic in our faith communities. We often hold up our increasingly tattered pictures of the forever-gone yesterdays like shields against the reality of a changed world: talking only in terms of budgets and volunteers, decrying the spiritual perils of Sunday morning sports rather than wrestling with our own complicated complicity in our communities’ spiritual and institutional decline; shouting “Sunday is coming!” while forgetting that the path to Easter treads through the cross at Friday and the tomb at Saturday.

However, grief is the first step towards hopeful engagement with reality. When we can acknowledge what has already gone into the arms of God, when we can release our frantic desire to return to our imagined yesterdays, when we can stop building ever more fantastic ecclesial castles in the sky, then we are also able to notice the new things that God is already growing out of the green earth. Wherever our suffering is, that’s where God is waiting to meet us: to guide us through shadowed valleys that we have long avoided and to bring us to new homes, made from God’s own body.

About a month ago, before I gave this talk at a public event, we were sitting at the dinner table and Michael asked why I would not be able to perform our nightly hymnological exercise that evening. I explained to him that I was working in my office on an event about helping people grieve for all the places in the world that have been hurt. He paused and asked,

“Did we hurt them?”

I took a deep breath.

“Yes.  Not you personally. It’s just really hard to live in the country that we do and not hurt the planet.”

He paused again.

“I want to stop people from hurting them.”

Another pause.

“Even if they hurt me when I do it.”

In this moment is all my rage and grief and hope: rage at the broken planet and broken church that were now his birthright through no fault of his own, grief at the undeniable reality that his life would be harder than my own, and hope at this very young determination to keep trying anyway: a determination that might not change the world on its own, but was still something incalculably precious.

Just because I miss it, doesn’t mean that it needs to come back and even if its ending truly is a tragedy, then that also does not preclude possibility or hope. My son’s spiritual life is a site of hope for me as well as grief. I see him captured by the idea of turning guns into garden tools; and going outside to break his bubble gun in half because he knows that Christians don’t kill. I see the group of kids, nearly half of our small school, who gather in our front yard every week for hot cocoa and muffins before biking to school together. I marvel at the incredible interactions I have almost daily with people who are hungry to wade into deeper spiritual waters than they’ve ever waded into before; even if they’d never dream of calling themselves religious.  And in all of this, I see new things I can celebrate, even as I mourn all that is passing away.

What solastalgic ghosts are you sitting with right now? In your spiritual community, what are you mourning that was once cherished but is now lost and perhaps has gone as-yet-unnamed?

May all that springs from the soil of your lament offer you hope and challenge for the good futures that you can help birth for your communities and for our planet.

A version of this talk was given as part of an event entitled, “Solastalgia: Homesick in A Climate-Changed World” hosted by the BTS Center. If you would like a space to grieve with others, make sure to register for “Lament With Earth“, an evening with original music, poetry, and ritual with the Many on Thursday, December 9th, from 7:30-9:30PMEST.

I had the second best meal of my life yesterday.

It was the highly unexpected end to an arduous quest for Melissa (my wife) and I, as we attempted to go on our first date in eighteen months and also belatedly celebrate our fourteenth wedding anniversary, which had been rudely curtailed by a household stomach flu; which led to us trading our plans for Glorious Piles of Small Plates At Fancy Restaurants for Cleaning Up Vomit and Stress Eating Mozzarella Sticks At 8 PM at Night.

Two weeks later, we set out again, sponsored this time by vacation and the generosity of an island friend (thank you Jenny!) who graciously agreed to pick up our children, feed them, and put them to bed so that we could go out and adult together.

We went into the city in the early afternoon (Portland, Maine. Population, 75,000, which boasts both the highest level of hipster-pretension and amazing small restaurants per capita in the country), had a couple drinks, and wandered around blissfully until suddenly discovering that the restaurant we had based our dinner plans around was closed unexpectedly. This necessitated some frantic googling, a very quick text exchange with my incredibly knowledgeable foodie sister-in-law (thank you Patsy!), and a lot of rapid COVID risk evaluation of our short list of alternate candidates. This process ended us up at Little Giant, a small bistro in the West End of Portland, a good mile’s walk from where we were, and one of the few places in town that unapologetically requires vaccines for its diners.

[Quick review: Go to this restaurant before they become famous. They have a short menu of small plates and main courses that changes frequently. Their food is sourced seasonally and locally, which they use to great effect, and if you’ve ever wondered “Why fine dining?”, you’ll see why here, where their careful attention turns good ingredients into glorious masterpieces. The highlights: buratta with pickled watermelon rind, scallop ceviche in chive oil, hangar steak with bok choy, and crab with black rice and horseradish. Their waitstaff clearly cares about their food and is also sneaky good at pairing wine from their well-curated list with whatever amazing food they’re bringing to you next. One good step down in $ from the most famous places in town, with small plates at $8-$17 and main courses at $25-$30.]

My wife and I are foodies and have a running list of of the best meals we’ve ever had since we’ve been married [Our top five, in ascending order: dinner at the Samoset in Rockport during our honeymoon, our first meal at Keon’s Bistro in Haverhill, a five course wine dinner at Michael and Gretchen Arntz’s house with great company, our meal at Little Giants, and at the very top, the chef’s tasting menu at Evo in Portland five years ago, where they brought us piles of delicious things until we had to get the boat home.] Making this list is not just about the food, although good food (and drink) is essential. It’s also about the moment, about the company, the conversation, the weather even. I’ve had great meals on otherwise forgettable nights that have already faded from memory. I’ve had meals that were less-than-perfect that will stay with me forever because of the moment when they happened. A Best Meal is an ineffable alchemy; and when all those ingredients come together, the whole experience will feed your soul for months.

We sat and we drank and we ate. I successfully fought off the urge to say grace at every new course and unsuccessfully tried to stop making slightly-embarrassing guttural exclamations of delight with each new dish. We talked about our last year, about our dreams for our future and our family, about our hopes for our new house and the shapes of the next season of our lives, which we are are so close to entering into. We counted moments in bites rather than seconds and slipped gently out of the stream of time; only to return, with the check, nearly three hours later, wondering where all the time had passed.

We tipped our way back to our car, the rain falling lightly on us, feeling like we had compressed a week’s worth of rest into one glorious evening. As we headed back exhausted, on the last ferry, ready to thank our sitter and fall into bed; I reflected that this, I’m pretty sure, is what we’re supposed to mean when we say Holy: not the fussy dustiness of dead words and stained glass windows, not the defensively mathematical precision of doctrine or morals, not the intimidating contemptuous grandeur of a Being that has somehow deigned to put up with us because it didn’t have any better choices; but rather the promiscuously overflowing exuberance that makes souls out of dust, grows hope out of cold concrete, and which turns even the plainest encounter into communion with the love that birthed the cosmos.

We tend to think of the life of the Spirit as a reward for assiduous practice, or as something done on our behalf by religious professionals, or that thing that’s supposed to happen when we gather with others at long-proscribed times and places. However, it is in fact a gift; one that comes often unasked-for and unexpected, and turns words and silence into wisdom; turns food into sacrament, and turns time into eternity. I’ve encountered those moments more than once in explicitly spiritual settings; but often I’ve found that the most memorable ones tend to ambush me when I’m hardly looking for them.

Frederick Buechner says

Some moment happens in your life that you say yes right up to the roots of your hair, that makes it worth having been born just to have happen. laughing with somebody till the tears run down your cheeks. waking up to the first snow. being in bed with somebody you love… whether you thank God for such a moment or thank your lucky stars, it is a moment that is trying to open up your whole life. If you turn your back on such a moment and hurry along to business as usual, it may lose you the ball game. if you throw your arms around such a moment and hug it like crazy, it may save your soul.

These moments are invitations:

Life is far more wild than you dream.

Do not spend all your time splashing in the shallows.

Swim to the Deep, whose waves lap up on your shore, and dive into the arms of Love instead.