You live in every corner of my heart. I hear your voice In the quiet pauses And gentle glances that fill a room. I think about you most during Ordinary moments.
Thinking back, when I was young, You were strong And the world seemed safe. You hugged me tight And I thought you’d Never let me go.
Now, I remember you most When time stole your thoughts And memories.
You’d look to me In the confusing moments. I’d smile, Hug you tight, And you knew You were safe.
As your thoughts Disappeared into the haze, I held your hand tight And reminded you That you were safe.
I wish I had hugged you tighter But I didn’t realize it would be Our last hug.
When your voice fell silent I heard my soul break Into a million small memories That don’t fit together But that define Us together More than any Mere words.
02/03/2025
If you’d like to read more poetry, try these links.
My mother, myself, Two sides of a mirror, When the glass is dim And cloudy.
Stained in a few places, A scratch here or there, There is no doubt We are alike in so many ways And yet, we always Moved in different directions.
I recall the similarities And the differences As if they were items on a shopping list I left home on the counter Even though I knew it well.
Same disability, Both treated differently. One in the 1930s and the other In the 1960s. So differently, but still Barbaric by any modern definition.
Cloaked in trauma That ruled our adult lives While we were both so clueless About how it affected us.
We were both told stories About ourselves that hid the truth.
You, the child of a disabled father Who was denied an education That was considered a waste Of time and resources In a world that once Considered a handicap A moral failing.
Me, the child of a disabled mother Who never allowed that word to cross Her lips or be said in any conversation And who overcame every obstacle.
Also me, the child who never understood How dangerous the word ‘handicapped’ Used to be back when Handicapped children had no legal right To a public education.
You taught me to say, I’m not Handicapped. There was a little problem with my legs When I was born, and I had surgery To fix it, and it left me a little bit lame.
Just as you were taught to say you weren’t Either. You were simply dropped Down a flight of concrete stairs By an elderly aunt And that injury led to your issues.
You grew up believing your story As much as I grew up believing mine Until the facts that had been concealed So long ago, could no longer Be hidden.
Until the photos, the records, the Whispered stories among relatives, Could no longer be denied.
You spent your life Saying only what needed to be said, Keeping silent Or spinning a story that made things Less dangerous, less ominous Until neither of us could tell The truth from the story. You chose the reality You could bear.
I spent my life Saying everything That came into my mind Oversharing with anyone who’d listen Or spinning an ever-changing story that made things Happier, calmer, or in some way richer, Until I became lost in it As well. I chose the reality I could bear, too.
My mother, myself, Two sides of a mirror, We became the flip side Of each other. Forever imitating one another But always moving to The opposite side.
Only able to touch Through the cold, shivery Smoothness That kept us eternally moving The other way.
I’m right here. You may not notice me anymore, but I am still here.
You may think my smile means something. You may believe me when I say, “I’m fine,” because you want to believe me — and then move on.
What else am I supposed to say? When your body repeatedly falls apart, and there is nothing left to try to stop it, are you going to announce, “I’m desperately ill… again”?
I’ve learned that my reality makes people uncomfortable, because eventually, even compassion has a limit. But it’s still my reality.
My reality is more than you want to know, or maybe more than you can handle knowing. But either way, I’m still here, handling it, because what other choice do I have?
Planning feels pointless when every plan dissolves before my eyes. It’s hard to take action when your body repeatedly, relentlessly lets you down; when illness and medical urgency demand to be heard above all else.
I hold back even on the things I genuinely want to do, not because I don’t care, not because I don’t have desires, but because caring has become exhausting, and hoping has a cost I can no longer pay.
I’ve stopped imagining the future, not because I don’t care, not because I don’t want one, but because I no longer know where I fit inside it. Every time I imagine a life ahead, it crumbles before my eyes, and no amount of work or effort changes that reality.
Hope becomes dangerous. Planning becomes cruel. When every plan is eventually taken from you, what is the point of hoping?
The dreams I held, and still hold, don’t disappear, I just quietly let them go as quickly as they appear. My hand can’t hold the string tight enough, and I watch them, like balloons, disappear into the sky.
They linger as reminders that I am no longer fully living, and yet, I am not dead yet, either. I’m living in the ether of illness. I am slowly becoming a memory; someone old friends check in on once in a while before scurrying on with their real lives, that no longer include me.
Empathy becomes cruel when it is the only pattern left in your life. Sympathy is even crueler.
When your choices are ‘hope and constant disappointment’ or ‘planning for something that will be taken from you and leave you emptier than before’, what do you choose? After a while, you stop choosing at all.
Do you sit and watch the world go by? Do you keep talking about the illnesses that quietly steal your life away? Or do you try to converse, carefully, briefly, until even that becomes too much for others to carry?
After a while, conversation seems useless, too. You stop contacting anyone, and you imagine their great relief. And in many ways, your voice starts to embrace the silence. It’s just easier.
So, I read. I think. I write about things that seem important to fill the minutes and hours that I exist. I tell myself these things matter. And I try to believe it.
Then, even that becomes hollow, because I know, so well, that words are not actions, and the actions are beyond what I can do. Naively, I thought maybe my words would enough, but slowly, relentlessly, I have realized that is not true – at least not for me.
How desperately I want it to be true, how desperately I wanted my written words to become my voice, but desperation does not change reality. Words unread are nothing at all. Words just become something to fill the relentless time that each day takes.
That is the rhythm of my life now. I am a songbird that no longer has a voice. I am an eagle that can no longer soar. I am the broken-down old horse that grazes on a barren field, trudges to a cold stall at night, and searches for a slice of apple in the empty pockets of faceless people I no longer know.
This is nothing like living. I have lived and I remember what it feels like. I remember having a small spark that lit one person’s way. The spark is gone, the way has gone dark, and this is nothing like living.
I am the old dog who waits by the door for an owner that has passed away, and I have no idea – only long, empty, faithful days of waiting for a joyful reunion that will never come.
I’m right here. You may not notice me anymore, but I am still here. Please, someone notice me.
If you enjoyed this poem, you might find Jan Mariet’s book, Our Resilient Hearts, to be something you would enjoy. You can find it on Amazon at Our Resilient Hearts: Thriving Beyond Chronic Illness: Mariet, Jan: 9798315554523: Amazon.com: Books . For anyone navigating chronic illness, disability, or the invisible weight of pain, this book is your companion, your mirror, and your voice. Our Resilient Hearts is more than a collection of stories—it’s a journey toward hope, healing, and hard-earned strength.
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.
Nobody’s first choice. Not anyone’s favorite person. People may say I matter, but those are just words and occasional forays. There’s always someone else they’d pick first.
It’s a quiet kind of pain, knowing that no matter how much love I give, I’m the one left waiting. Wanting. Hoping. Waiting for the truth I already know will finally be spoken, pretending it doesn’t matter, while my silence screams what my words cannot.
I’ve learned that it’s better not to try, because trying means failing again. It aches to know, no one fears losing me.
If I vanished, it would be a while before anyone noticed. Maybe a passing thought months later, “I wonder what ever happened to her…” Or maybe not even that.
I keep hoping someone might choose me first, but after a lifetime of waiting, and trying, and aching, I know better.
I’ve always been the vague backup plan, the easy choice. When I refuse to settle for that role, love disappears entirely, if it was ever truly there at all. Was it ever really there?
Deep down, I know the answer. Each morning, I wake because the alarm rings, not because of hope or anticipation. To hope feels dangerous now. If I do nothing, I ache with loneliness; if I reach out, I ache with rejection. Either way, I bleed.
How can I have lived so long and never been chosen? Never asked out? Never danced? Never heard someone say, “I just needed to hear your voice,” and they were talking to me?
Who lives like this, knowing they weren’t even second-best.
I’m kind. Helpful. Compassionate. Strong, resilient and resourceful. I find joy in small places. I live my convictions. I spend my life trying to make a difference, quietly, relentlessly, and still, I am never what anyone wants.
I’m nobody’s first choice: I’m not even anyone’s act of desperation.
I’m just the space people pass through on their way to someone else.
It feels like my entire life is spent managing my illness: planning, scheduling, organizing medications, tracking medical and lab appointments, and calculating whether simple activities are even possible. Fatigue, anxiety, immobility,
and unpredictable energy levels are my constant companions.
I’ve always tried to find joy in small places. But even when I succeed, sometimes I want more. I want to find joy in big places, in big ways, in full, happy days instead of fleeting, happy moments.
Just once, when someone asks how I am, I’d love to say, “I’m fine” and actually mean it.
I’d love to live without timers reminding me of medications that can’t be late, without the days-long consequences of losing track of time just once.
I write books that few people read. I post words that rarely reach those who truly care. I make graphics to fill the hours, not because inspiration has struck. I make crafts with love, but rarely have anyone who truly wants them.
I share on social media just to feel some connection: a few likes, an occasional kind comment, and then silence again.
Those who once filled my life are kind and encouraging. They want to hear good things, hopeful things. I feel like I’m letting them down on the days when I can’t wear the mask that hides how empty I sometimes feel.
I long to be needed, but no one needs me. I long to be productive, but I rarely am. I used to be the first to offer help. Now I need help too often to even ask for it.
Good news always seems to be followed by struggle, fatigue, pain, and a wave
of isolation that never really lifts.
Food, crowds, costs, or distance create barriers at every turn.
The hobbies that once brought joy — crafts, gardening, even organizing — now feel like distant memories that are too painful or exhausting to even imagine.
When did driving ten minutes require planning and courage? When did repotting a plant or trimming a shrub become painful achievements? When did finding joy become so hard?
I still try. I still smile. I still hope.
But some days, hope feels so fragile, like a whisper I can’t quite hear.
Introduction: Disabilities and chronic illnesses aren’t black and white. Like the world itself, they come in many shades of gray, and sometimes, contradictions exist side by side. Life isn’t divided neatly into ‘healthy’ and ‘unwell.’ There are countless ways of being, with shifting energy and overlapping truths. We can live in the space of ‘both/and.’
Those who silently struggle carry a thousand untold stories. They do not speak of the shadows that cling to them, or the heaviness that steals their light.
They become expert at silence, at suffering quietly behind locked doors, hiding everything in small, hollow words that reveal nothing.
They imagine strength, rising toward growth, toward creation, toward purpose, instead of being consumed by exhaustion and pain.
Each time they whisper, “I’m fine,“ their mask draws across the storm inside.
Unrelenting weight divides a soul in two.
One side reaches for meaning, for independence, for the dignity of work and purpose.
The other side knows the truth: that pain will rise, fatigue will return, and each attempt will crumble to dust.
It is the cruelest battle, between the boundless soul that longs to rise and the weary body that pulls it back to earth.
Introduction: Psoriatic disease, short bowel syndrome, myotonic dystrophy, a congenital and progressive disability that limits my mobility, severe damage from radiation treatments, more damage from metastatic cancer therapies, and ankylosing spondylitis — most of the time, I manage. I find ways to cope. But then this wave comes, and I’m struck down by sadness, jealousy, and a crushing sense of loss. I know these flashes of anger are not unwarranted, yet they often leave me drowning in feelings of failure. Sometimes, I turn this anger and sense of failure inward, resenting my weakness, simply because I’m not able to cope as well as I think I should. And so, this poem rises from the quiet, intractable ache of being human.
When Silence Trembles
by Jan Mariet
Let me be sad. Let me be angry. Let me feel jealous and cheated and swallowed up by all the ugly emotions that come before acceptance or that come crashing back on a bad day.
Sometimes, I just can’t make peace that my life is chained to chronic pain, crushing fatigue, and GI horrors most people couldn’t imagine in their worst dreams.
Most days, I hold it together. I deal with it. I even accept it.
But then there are days when it slams into me like a tsunami, leaving me terrified, furious, heartbroken, and drowning in confusion.
On those days, nothing I do can quiet the anguish because it roars too loudly.
Chronic illness shakes me to the marrow, twisting my cries into silent, unheard whimpers.
I used to be a teacher. Before that, I was a city supervisor. Here and there, I’ve been a writer.
Now, I am a nothing. I sit in a house, day-in and day-out without anyone to talk to.
I live for Mondays, when the home nurse comes to take my blood work and change my PICC Line dressing because it is 20 minutes of conversation I don’t typically get.
My hobbies are gone. My job and volunteer work are gone. I’m completely unreliable because I never know if I’ll have the energy or ability to do anything.
I’m so hungry sometimes while food spoils in the fridge because I don’t have the strength or the energy to actually cook it.
Anything I try to make my life better fails just like me. A complete and total failure sitting alone day after day.
Be patient, they tell me Your body needs time to heal as months and months pass and very little changes.
The years pass and very little changes. And all I can say is, “I used to be . . .”
Where were you when you learned that your cancer had metastasized?
I was home, alone, listening to a voice on the other end of a phone wondering if I was really hearing what I thought I heard?
Where were you while I was having it biopsied?
Bravely doing it without sedation just because I’m a tough.
Where are you, as I’m losing my voice and possibly my mind, while I’m researching like mad hoping that it doesn’t mean what I know it means.
When the biopsy reports came in who held my hand as the doctor said it is even more advanced than I thought?
My hand was, of course, empty.
You’ve never seen a stiffer upper lip. The Brits would be proud of me. but I’m not a Brit.
I listened to the words “Stage 4” and “inoperable” I almost, in my mind, decided no more treatment until he told me, treatment won’t cure. Treatment won’t even prolong, but it can make your passing more comfortable. They call it “comfort chemo” and I cannot imagine two more contradictory words.
I’ve already started to lose my voice. It is whispy, and raspy, and sometimes I say words, only to realize that no sound came out.
And as if that wasn’t enough to bear today, the biopsies from my throat, my stomach, my intestines my entire GI system, came back. Words like immune caused chronic gastritis, precancerous polyps and the beginnings of stomach cancer stand out.
No wonder I can’t eat much.
And through all of this, I’ve stood strong Until today, when I broke-down because of stupid things three times — because the van driver asked me a question, I answered but no words came out of my mouth, and she yelled at me.
Stage 4. Inoperable. Comfort chemo. Hospice, rehoming my precious pup — for those I stood brave and didn’t break. Refused to break. But a van driver I’ll probably never see again in my life yelled at me unfairly, and I crumbled.
Sometimes I think, oh how the mighty have fallen, but I am not one of the mighty. In my heart I’ve always been just a small person, wanting to help others and live a small life.
I want to talk, and chat about happy things, pleasant memories, hopes and dreams, and our favorite flavor of ice cream, play board games, watch the sunset in comfy chairs with our favorite beverages with a group of friends who feel as at home as if they were family.
I just want Sunday night family phone calls and visits that seem to come out of nowhere. But you can’t manufacture these. You either have them or you don’t. And I don’t.
My parents had these things, and I so happily lived vicariously through theirs. I want one last Thanksgiving with a crowded table, Mom’s Christmas china, people by the TV cheering on their favorite teams or scowling at an ump’s bad call.
But my heart knows, it will never be again.
I am brave. I am strong. I know both of these things, you don’t need to tell me. But my heart is not made of stone.
My life right now is so empty. For whatever reason, my life never entwined with anyone else. There were no dates, or boyfriends, or girls’ nights out or even a friend I could say, hey, let’s go shopping or two a movie, or to a craft fair. It all seemed to be an art I never learned.
And while I know the time and day for these things is long gone it doesn’t keep me from craving it all the more.
A week at a peaceful Michigan lake in an A-frame, a walk in the woods, or playing croquet (of the most vicious variety) in a flat square grass. Somehow, even things like that have been beyond my grasp for as long as I can remember.
I never wished for riches, or power, or fame. I just wanted Thanksgiving crowded with family I knew and loved, making all of our favorite foods while some stayed up talking into the small hours of the morning, while others toddle off to bed in the early hours with a to do list that guides each early rise, and fills their lives with purpose.
Now, I fight the sleep at night, afraid that I may not wake up at all., and knowing that all too soon that will be true.
Introduction: Years ago, an old friend found me on Facebook. I’ll never forget his first message. He asked if I remembered him, and went on to say that he would understand if I didn’t. I was a little shocked by that statement, because we had been really close friends during junior high and high school, we used to talk on the phone all the time, and we shared the most personal thing in the world to either of us – our writing. I could have never forgotten him.
We both aspired to be writers. We both went on to do something completely different with our lives, while keeping our love of expressing ourselves in writing — he in the form of poetry, and me in the form of prose.
We both went on to experience physical problems that changed our lives in ways we never anticipated. With me, it was my legs. With him, it was his vision. And still, we both found ways to have happy, meaningful lives.
The funny thing is, Mike and I didn’t go to any of the same schools. We didn’t even live in the same city. We met in 9th grade when we both were selected for the all-state chorus. There were four of us from my junior high who were selected and went together. We were all sopranos. We all sat together in that huge group of strangers for rehearsals and the performance.
We were in the last row of sopranos, and right behind us were the tenors and basses. There was a young man sitting right behind us, and somehow one of the girls I was with picked-up on the fact that he was by himself. That was Norene, and true to her beautiful spirit, she turned around and introduced herself, and drew that young man into our group for the rest of time. We all became fast friends that weekend.
We all shared a love of singing. Eventually, we all joined the same youth church group, and we remained close through high school. Eventually, our lives took us into different directions and different places, until years later, when we found each other again on Facebook. To this day, I enjoy reading some of his current poetry, which he sometimes posts online.
While going through my books this week, I came across a notebook I had in high school, where I wrote poems from age 14 through 18. Now, I admit, looking back on them, that most of them were just plain dreadful, but hey, I was just a kid.
In my old notebook, I came across this poem that I wrote on October 18, 1981 (for Mike’s birthday the next day) while sitting, watching a fire burn in the fireplace on a chilly October evening.
It brought back such good memories of two friends who shared their writing with each other. I decided to share it with “vintage” friends (you notice I didn’t say “old” friends.) Even after all the years, Mike is still my October kind of friend.
An October Kind of Friend (Written for Mike)
Bleak October, cold and gray, Thy quiet nights and whispy days Made my soul lain-back and weary, Quiet, dim, and all but dreary;
‘Til a tiny flame arose Into a fire did transpose And fire turned to blazing roar And then the flame was seen no more
The fire blaze with warmth and ember Warmth to last me through September ‘Til October comes again. You’re my October kind of friend.
Starting a blog is an idea I’ve thought about for a while. I enjoy sharing my ideas and experiences with others. I realized the therapeutic power of writing as far back as 4th grade. It is a format that has served me well throughout my life.
I especially want to thank my friend Leeann for encouraging me to start this blog. The support of friends is what makes life worth living.
