early 15c., of diseases, “lasting a long time,” from Middle French chronique, from Latin chronicus, from Greek khronikos “of time, concerning time,” from khronos “time” (see chrono-). Vague disapproving sense (from 17c.) is from association with diseases and later addictions. Literal sense “pertaining to time” is rare in English. Also of being or embodying something habitually, regularly, “he is habitually a chronic grumbler.”

The negative medical association of chronic is well known and not especially interesting to me. But chronic as related to time, of something becoming habitual over a slingshot of our days and years, or even as ultimately becoming fused with our identity – that has my attention.  What in our lives has been “chronic”? And how has or how can this habituation — even if it occurs by way of the deep drain of a long-term illness — open a door onto a new and clearer view of the world?  A view that seems inevitably colored by gratitude.  This notion of chronic has interested me a great deal lately.

In my life, I have come to know and understand the tablecloth-pulling hat trick of unexpected disaster. I know by first name the bad news that comes with a phone call and leaves you sitting at the table all of a sudden without any linens, your wine glass and salad plate knocking hard against each other in reverberating shock.  But walking the long walk of a chronic autoimmune illness with one of my children has been an altogether different marathon experience.  For the past 20 months that we’ve been living in this place, including the most recent 7 months we had a name for it, I’ve been trying to wrap my head around what this feels like. That is, what it feels like to have a child with a chronic and progressive illness, who’s daily wobbling on this balance between having to leave his mainstreamed life of school, homework, friends, and also still participating in it, trying to making a go of it, despite the inflammation raging in his brain.  I look at my kitchen and see the story it tells – on the left side of the stove there are no fewer than two dozen pill bottles and supplements; on the right, a school reading log to sign, popcorn, leftover Halloween candy.  The simultaneity of sickness and normalcy, itself a bipolar burden to bear.

There is a strange push-pull in living this world without the ability – as you might be able to do for a sudden emergency – to expatriate out of the “normal” world.   When disaster strikes, we stop going to work or school for a spell, all our routines halt and our communities (hopefully) respond and step in.  In a long-term slog of a chronic illness, we manage the upheavals and sleepless nights behind our front doors with part of our brain on red alert, and still chit chat at the grocery and take the conference calls and sign up for fall carnival volunteer shifts.  It’s less of a double life back-and-forth toggle and more of the necessity to live two lives simultaneously. Planning playdates or extracurricular activities while emailing with doctors across the country with the subject line in ALL CAPS.  Playing a daily game of musical chairs that involves trying to get in as much work as possible before I get the biweekly call from the school to come early. Wondering whether I should put energy into home school, or even unschooling for a spell, or whether he is getting better and might actually like to learn guitar.

I’m constantly calibrating, re-calibrating.  Can he stay in school next semester? Can we all go to see the new art installation park downtown?  Would a family trip be too much? Am I over-medicalizing? My calculations are often totally wrong and we end up at the art installation park with our snowcones melting in our hands as Henry cries and screams and melts down 10 feet away.  Frequently, too, these experiences involve someone else, unsuspecting and well meaning, engaging me in a conversation like nothing’s wrong. “Yes, middle school is going fine. Sure is a big adjustment!”

But the push-pull of chronic illness, I’ve learned, is less about the rest of world and more about me.  It’s exhausting and discomfiting, like wearing a too-small mohair sweater in July. And in my typical coping strategy of sharing transparently – or TMI, depending on your comfort level with me – I will send out emails that say something to the effect of “WE ARE ALL WEARING INCREDIBLY FUCKING ITCHY SWEATERS WE CAN’T PULL OFF AND WE ARE NOT ALL RIGHT.”  Best beloveds will then jump to reach out, and I – instantly embarrassed by my drama, by the fact that we’re not undergoing chemo or recovering from a car accident, that it’s just another Wednesday night with this beast – will back pedal saying, “we’re okay. We’re okay. I’m sorry to worry you.”  Why does the emergency feel more warranting of help? I am reminded of Brene Brown’s talk about the deep shame we often feel when there is something bad happening in our lives. I am discomfited with my own self, see?

I will often feel lonely and want to be around people and as soon as I do and am in conversation, I want everyone to stop talking and let me just curl up on the couch again alone.  I dread someone asking me how Henry is because I hate this is all we are, but then I also find it’s the only thing I can talk about, and will bring it up at inopportune times, unsolicited and awkwardly, as in a meeting with a new client.  I can feel myself becoming one of those wide-eyed, wild-haired moms that chase grey-area diseases down every rabbit hole, but I can’t stop because what if the furthest rabbit hole is the one to heal Henry?  I feel as though I can see my friends only as though from a great distance, like through the wrong end of a telescope.  I am squinting across a great, dim expanse and trying earnestly to remember what is happening in their lives – a new job, trouble in preschool with a child, an upcoming trip. I know they’ve told me but I’m in molasses now and it’s all fuzzy. It feels like trying to remember enough French to order in a restaurant, and my tongue is thick without practice; I am straining at it, desperately wanting that old fluency back. Chronic illness, in short, is an uncomfortable simultaneous living in two worlds, neither of which feels sturdy and supportive.

But – and here’s the nut of it, y’all – what’s occurred to me recently is that none of these things is really the feeling I’m trying to capture and communicate. The long, tight squeeze of the “chronic” is just the passageway, the arc of time, like a tunnel that we are moving through.   What it brings us to, and who it makes of us habitually, is what matters.  It not like an acute crisis, the rock bottom disaster that breaks us open like a sparkly geode, painfully beautiful as that is.  The chronic is more the relentless rock-tumbler that seems to endlessly knock us around as it slowly – oh god, so slowly – makes our little average quartz selves into something else entirely. I don’t know that we can easily clock this transformation in a mirror. I think, very often, we can only know a new and deeper gratitude through our friends and beloveds — and our ability to appreciate and take joy in them.  We take so little for granted, all kindnesses fully felt felt and appreciated, after a buffeting like that.  I had the unexpected joy of seeing this through one of my children’s friends recently.

Last month, Steven and I slogged through the high-fructose insanity of what we call Hell Week: all three of our children’s birthdays within five days.  It’s intense, it’s joyous, it’s crazy-making and there are tears, ruined appetites, and a shocking amount of wastefulness in wrapping paper. But it also comprises some of our happiest and most helium memories – just all squished inside 120 hours.  This past year, we decided to harness the crazy by letting our twins each take a friend out of town to an LSU game on a generous grandparent offer. As a homage to turning twelve, the exit door of childhood looming, we let them each have their own hotel room with their respective friends and a lot of time to themselves.  They didn’t need our constant entertainment as much anymore, and anyway, there were photo filters and horror movies to discuss which we weren’t invited to.

For me, however, the fun of the weekend was overshadowed by the knowledge that we would have to leave by 8am Sunday morning to drive back quickly and get Henry admitted to the hospital for a two-day intensive immunotherapy infusion that we hoped would be a big part of his healing. The procedure was not without risk or side effects, like asceptic menigitis and skull splitting migraines, which could largely be avoided by pre-medicating with Ibuprofren and hydrating like it was a JOB.   Drinking a six pack of water bottles at a football game with cokes and Icees was a total buzzkill for Henry, but despite the partying, tailgating crowd around us, all I could see was a second trip to the ER because we hadn’t hydrated enough.

I turned to Henry’s friend Finnegan, and said, “Hey, in the spirit of being at a college football game and in support of Henry’s upcoming procedure, can you haze him to drink water all day?”  Finn looked up at me, still 11 years old, and blinked.  Behind him a couple of aging frat alums were smashing giant foam purple No.1 fingers into each other’s faces.   “I’m on it,” he said.

Finn set his watch to chime every fifteen minutes, whereuon he would look at Henry and chant, “Chug! Chug! Chug!” while Henry laughed, happy with his friend’s attention, and guzzled water.  After the game, we took the kids to a pizza place. Henry slumped into a foul mood as everyone ordered soft drinks he couldn’t have.  Finnegan stood up in the crowded restaurant, clanked his fork on his glass, and announced that he would be doing something to embarrass himself every time Henry finished a glass of water.

Henry instantly slugged back 8 ounces of water and Finnegan gamely stood up, clanked his glass again and loudly gave a toast to Henry in his best Monty Python accent.  “Give it up to me boy ‘Enry, who hath no haters!” After glass #2, he tried to order a mimosa at the bar, insisting that he had a rare aging disease that made him appear a cherubic faced sixth grader.  “It’s a burden and a curse, I tell you,” he deadpanned.  After glass #3, he stood and sang a solo from the Book of Mormon while we all clapped wildly and laughed until tears streamed down our cheeks.  Henry peed clear for a week after that dinner.

And of course, I’ve felt it so strongly in my own circle too.  Last week I held a yoga benefit workshop to raise money for medical professionals in Louisiana to receive free CMEs on Henry’s particular autoimmune disorder. I’d been worn down by a rough week with Henry’s symptoms and a quick but great trip with my stepmom and daughter just prior, and came skidding in on bald tires, emotionally, to teach.  But I came in way of the chronic, of the time tunnel that can lead to a new habitual way of viewing, so I saw people afresh, like a new lens in front of my eyes. I saw 15 yoga students who were friends and supporters, themselves carrying their own illnesses and body betrayals, their griefs and pain and stresses and round-the-clock on-call jobs, that each had individually shared with me. I saw them carrying those burdens and somehow, in the same hands, also carrying this gift of support to me and Henry and kids like him.

I saw a half dozen of my friends gather to meet me around a dinner table later that night.  I saw them wave dismissively, but lovingly when I did my usual awkward two-step and insisted were okay, no need to call out the troops, and then proceeded to cry a little bit onto my artichoke flatbread.  They loved me as they always do, inexplicably, but it wasn’t their love and support that moved me the most. It was through this heightened sensitivity where I could see their active love combined with each of their own pain and burdens, their hopes and struggles, that moved me so deeply.  I had a window into each of them showing up on their Sunday night, the contents their own arms held so fully visible, while still extending to me so much kindness. Somehow in living in two worlds through chronic illness, I felt I could see on two levels, the interior and the exterior, and my heart – that little oyster shell that had been rubbing its rough grain of sand, grew so soft and so big.

“Joy,” I heard the Reverend Betsy Eaves say today in quoting Nathan Eddy, “is a discipline, not an emotion. Joy is a discipline of perception.”  We have to choose, and the choice is not usually a coin toss. It almost always feels radically risky and high stakes.  Gratitude is the same.

To be chronic is to be in it for the long haul, to take it all in and view and feel all that’s around us on multiple planes, but with one heart.   How do we hold the love we are given? We hold it with the same hands we hold the pain.

I am coming through the chronic, I am barreling through the rock-tumbling time tunnel, and I am emerging more chronically grateful this Thanksgiving than I have ever been.