For my dearest friend, who has walked with me through every storm, and whose steadiness has held me through every season. As you walk through the storm, just know that I am here.

Jan Mariet 11/21/2025

Even surrounded by people you love, illness is very isolating. You carry an experience in your body that no one else can feel. You learn to speak in metaphors because reality is too complex to describe. You are trapped in a body that keeps failing you in quiet, relentless ways, and you know it isn’t the real you.

You grieve for the life you had.  You didn’t even realize how wonderful it was until it was gone.  You put on the brave face of acceptance, even though you feel like everything is falling apart.  You feel invisible and too visible at the same time.

You haven’t found the words yet to describe how you feel, what is happening to you, and you can’t even conceive how life will continue.  You just know it will.  And you aren’t sure you are even happy about that. 

You try not to talk about it, because if you don’t say the words, you can pretend things aren’t that much changed.  But you know, whether you speak it or not, that things are forever changed, and you aren’t sure how to deal with it.

You envision acceptance as reaching the peak of a mountain, shouting to the sky, and everything being completely, gloriously okay again.  But acceptance is a rhythm, something that ebbs and flows, not a climactic moment of achievement or success.

You don’t ‘arrive.’ You adjust. Until the next realization hits you like an unexpected wave that crashes over you, one you never saw forming. So, you stand back up. You adjust again… over and over again…as many times as it takes.

People rarely talk about this:  good days can be terrifying, because every good day comes with the questions: “What will I lose next?” and “Is this the last time I’ll feel this good?”

There is grief in joy, and fear in hope.  Sometimes, it is much safer to just keep putting one foot in front of the other without any expectation.  It’s safer to tell others, “I’m fine,” or “I’m managing,” because even speaking the words of how you actually feel makes it all too real.

Acceptance isn’t a destination; it is a rolling wave – sometimes gentle and sometimes hitting so hard with a painful sting that knocks you completely off your feet.  How could anyone who’s never seen the ocean even understand?

Illness rearranges your identity like a puzzle someone shook before opening.  Everything is a jumble, many of the pieces are wrong-side up, and it takes such a long time to right them before you can even start to see the picture.

Illness leaves you wondering so many things.  “Who am I if I can’t work the way I used to?”  “Who am I if my body doesn’t cooperate?”  “Who am I if I need help?”  “Who am I when I can’t help because my own needs take precedence?” “Who am I when I can’t do what made me me?”  It’s not just physical loss. It’s the unraveling of who you thought you were.

And when your faith needs to be unshakable, while you still show the world the light that has shone through you since the beginning of your days, a gale inside of you goes from rustling, to screaming, “Where has the love of God gone?” while you stand strong against it, and fear being overcome by it, all at the same time.  And you feel shame and weakness for even wondering.  Your thoughts and faith are in a whirl, like a swirl of autumn leaves against an unexpected wind.

You have lost an entire version of yourself: the routines that guide you, the independence that freed you, the you that didn’t have to ask for help, the you who could trust her body.   There’s grief for the life you had, but there is also grief for the life you thought you’d have, and that second one hurts most of all.

You miss being the one who was always called upon to help, and despise the you who now needs to ask for help, to the point you muddle on, completely denying that you do need help, need time and space to adapt, and yet, hate having to do that.

You are going through a long stage where you pretend you’re fine with it, pretend you’ve embraced the new life, and even believe you’ve moved on.  But really, you’re in grief, wearing the ‘I’m fine” mask, trying toconvince everyone, including yourself, that you’re doing okay.  Because admitting the truth feels too big, too heavy, too final.

The reality of illness lands hard, no matter what, and living with it can be anything from gentle ripples to raging sea, all within moments. For now, listen to the voice you can bear to hear.  Live the reality you can tolerate for now, even if it means wearing a mask and feigning total acceptance in between tears of doubt explained away as allergies to the dust we see through stray beams of sunlight.

There’s that strange, suspended moment when you stop asking “How long until I get better?” and start asking “How do I live like this?”  It feels like your brain switches tracks, from “temporary setback” to “permanent reality”, and you can’t unknow it.  It’s not acceptance.  It’s not peace. It’s awareness, and it lands hard.

It does come. Then the storm fades into a new ebb and flow of tide and wind. You learn to live in it, not because of your courage or faith, but simply because it is, in the end, the only option other than defeat. You don’t rise above it; you simply learn to exist inside it, until it becomes the rhythm of your own beating heart.

The post When the Storm Changes You appeared first on Jan Mariet's A Day in the Life.