Last Friday, I was living my best life, hosting our congregation’s very first drag show. I looked FABULOUS. My makeup was gagging. My hair was hairing. And I was, yet again, draped in a cloud of Betsy Johnson designed baby pink tulle and pastel rainbow crinolines – yes, my wedding dress made yet another real life appearance. I pull that fluff-fest out any chance I can get, and a drag show felt like the perfect occasion to show it off.

There I was, mic in hand, helping set up, emceeing the whole glorious, glitter-filled shebang. The lights, the music, the sheer fabulousness of it all – it was pure joy, and I was fully on my bullshit as both UU community minister and Carlisle Pride Founder…..until, of course, I got too hot.

Whoops.

Shit.

If you know anyone with Multiple Sclerosis, you know how ‘oh shit’ that ‘oh shit’ really is.

For us, “too hot” isn’t just uncomfortable; it’s like flipping a switch that turns our central nervous system into a bowl of overcooked spaghetti.

And so, just like that, my pride week ended not with a death drop or thrown shoe, but with a full 24 hours spent horizontal, paying the piper in the form of what felt like a full-body system crash.

Dammit.

Saturday was a write-off, a blurry, sweaty testament to the fact that even when your spirit is willing and your dress is epic, your myelin sheath might just say, “Yeah, fuck you, Chris.”

Sunday morning, I rallied.

Because, well, Unitarian Universalism.

And Reverend Phoenix.

After a deeply grounding service (like literally grounding. We preached barefoot for flower communion), I was pretty sure my body was still trying to stage a coup.

During service, one of the lipolipedema tumors on my left leg doubled in size and started leaking lymph fluid.

That’s not exactly a “may it be so”moment.

Reverend Phoenix, bless their intuitive heart, called me after I left the church – probably seeing the glow of a thousand internal alarms going off on my face – as I was driving myself to the emergency room.

Missing my kid’s 13th birthday party to be in the ER? Yeah, that’s a special kind of suck. That was my Sunday afternoon.

You plan, you prepare, you envision the joy, and then my body, a veritable symphony of chronic illness, sends a text message: “LOL 🖕”

The rest of this week has been a masterclass in strategic horizontal living. Because of the massive fluid buildup in my leg, they put me on Hella diuretics in the ER, which is why my home office has become a command center for constant bathroom trips and maximum recline, all in preparation for an upcoming road trip.

Nothing says “vacation” like meticulously timing medication so you can actually leave the country without fear of another round of weepy tumor that might require getting to know every ER in Atlantic Canada.

So, if you’ve ever wondered what’s it like to be me…..

It’s like having a really, really unreliable co-pilot in your brain who occasionally decides to reroute your nervous system through a swamp.

And just like a lying 1990’s infomercial….just wait! There’s more!

Surprise! MS isn’t the only thing trying to take me down on the daily! That’s right, I got the free bonus gifts of Lupus and Lipolipedema. For those unfamiliar, Lipolipedema is a delightful, rare, non-malignant mutation and over-production of the body’s fat cells.

Think of it as your fat cells having an existential crisis and deciding to reproduce at roughly three times the rate of a normal person, and then also get spongy enough to hoard fluid and inflammation with the zeal of a doomsday prepper. They store their prepper supplies in fairly large tumors. I have four of these currently. I call them the four horsemen of the Chris-pocalypse.

You can laugh. It’s dark humor, but it is pretty funny.

These three assholes – MS, Lupus, and Lipolipedema – are a formidable trio, specialists in the art of extreme inflammation, swelling, and edema.

And that, my friends, is what ultimately landed me in the ER.

It wasn’t just the MS fatigue from the drag show; it was the cumulative, glorious crescendo of all three playing a symphony of cellular chaos, leading to a level of swelling and internal disarray, specifically that leaking tumor, that even my robust spiritual fortitude (or pure, unhinged stubbornness)couldn’t wish away.

Living with multiple chronic illnesses is the ultimate lesson in relinquishing control. You can plan, you can aspire, you can even host a fabulous drag show in your wedding dress, but your entire biological system might just have other ideas.

For those of us who pride ourselves on emotional intelligence, on being able to navigate the complexities of life with grace and humor, chronic illness throws a wrench in the whole operation.

It’s a constant, humbling reminder that sometimes, despite all your spiritual wisdom and your well-honed coping mechanisms, your body just does whatever the hell it wants.

And what it wants, sometimes, is to make you constantly near a toilet for an entire week because of diuretics or lie in bed for 16 hours because your mutant fat cells got jealous of some drag queens and decided to throw their own inflammatory rave.

But here’s the thing, my dear friends…..

In the midst of the frustration, the missed birthdays, and the indignities of a leaking leg and chronically inflamed tissues, there’s a perverse kind of spiritual growth that happens.

It’s in the deep breath you take when you realize your plans have been spontaneously combusted.

It’s in the acceptance that some days, your best simply isn’t what you thought it would be….and being at peace with the fact that what you are able to do in that moment actually IS your best.

It’s in the radical self-compassion required to say, “My body needs rest, and that’s okay, even if it means missing out.”

It also teaches you who your true allies are – folks like the Rev. Phoenixes of the world who see beyond the polite smile to the underlying struggle, who give you the space to share sweary texts when the ER doc is a tool, and help keep your spirit chill when your physical self is screaming.

It teaches you to cherish the moments of full-throttle living, like emceeing a drag show in a wedding dress, because you know how quickly they can turn into an unexpected Saturday on the couch or a detour to the ER.

Having multiple chronic illnesses really sucks sometimes.

But it also, in its own twisted way, refines my spirit, expands my capacity for empathy, and makes me truly appreciate the days when my nervous system, my immune system, and my fat cells all decide to behave like polite, well-adjusted adults., and not feral trash pandas living in a dumpster fire.

Here’s hoping the feral trash pandas behave for the next few weeks.

And for that, I suppose, I can offer a begrudging, slightly exhausted, “Amen.”