Living With “IT”
We all know IT. Stephen King made sure of that.
His IT lurked in the shadows, waiting to jump out and terrify us when we least expected it. It was terrifying. Evil. Clearly the villain. Shapeshifting into Pennywise the Dancing Clown.
But the IT that lives in our house is different.
Our IT has a name too, it’s Lewy.
IT goes with us everywhere.
Living With “IT”
Unlike the fictional monster, this IT didn’t announce itself. It didn’t burst through the door or show up with flashing warning lights. It quietly slid into our lives, took a seat between us, and—without asking—became the third wheel in our relationship.
At first, it was subtle. A forgotten word here. A misplaced item there. We brushed it off like you do when life feels busy and aging feels normal. But slowly, IT grew more comfortable. More confident. More present.
We’re Quite The “Threesome”
Now IT goes everywhere with us.
IT decides when we leave the house.
IT determines how noisy a restaurant can be.
IT influences how long we stay, what we do, and how much energy is left afterward.
IT often insists on early evenings, familiar places, and routines that feel safe.
We don’t travel much anymore. Airports and crowds are overwhelming. Loud environments can be exhausting or confusing. We’ve learned that “linner” is our new dining sweet spot—early enough to avoid the rush, quiet enough to enjoy a meal without sensory overload.
These aren’t terrible changes.
But they are changes.
And here’s the part we don’t talk about enough: even when we adapt well, even when we find joy in new rhythms. I miss this well-oiled twosome; not appreciating the third wheel.
I miss the spontaneity.
I miss the long road trips and bustling restaurants; juggling who gets to pick the road trip music and stopping off at a rest stop to switch drivers.
I miss the version of “us” that could wander swap meets or antique stores without planning every detail.
Living with IT means constantly recalibrating; our expectations, our patience, our version of normal.
Normal, What’s Normal?
It means learning to coexist with an uninvited presence that never really leaves the room.
But it also means learning tenderness.
Because while IT may be the third wheel, love is still very much in the driver’s seat. We’ve learned to slow down, to choose calm over chaos, to find joy in smaller moments. A quiet meal. A familiar routine. A shared laugh that reminds me that beneath IT, he is still him.
Some days, IT is loud and demanding. Course language and words that can part your hair.
Other days, it sits quietly in the corner, reminding us it’s there.
If you’re living with your own version of IT, know that it’s okay to mourn what has changed while still appreciating what remains.
And you don’t have to live with IT alone.
Support groups, caregiver communities, and organizations like the Lewy Body Dementia Foundation can be lifelines; safe places where you can say “this is hard” without having to explain why.
IT doesn’t get to be our entire story and it sure doesn’t get to define all of it.
But we’re still here.
Still loving.
Still finding our way—one quieter, gentler step at a time.