Tag: living with illness

How People Disappear

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.

02/01/2025

Cancer Always Has the Final Word

Image of a teal ribbon, which is the symbol for cervical cancer.

It doesn’t matter if the ribbon is pink, or teal, or any other of a myriad of colors. It means another person has heard those heart-stopping words: You have cancer.

Once those words are spoken, disbelief does something strange. From that moment on, you barely hear anything else that is said. Or maybe you hear it, but you don’t understand it. You certainly don’t remember it. The words bounce around the room like sound effects in a movie theater, echoing without meaning, until everything turns into a kinetic blur.

And if you happen to be alone when those words are spoken, the first time you try to say them yourself, they come out one of only a few ways.

Sometimes they are choked out through sobs, leaving the listener struggling to understand what you are trying to say, only knowing that whatever it is has shattered you.

Sometimes they come as a low, gravelly whisper, barely audible, but powerful enough to silence the room.

And sometimes, you don’t say them at all. You keep them locked inside, afraid to even whisper the words you are certain you must have misheard, even though deep down you know they are true.

The unfairness hits hard. Why me?  Reality hits.  Why not me?

All the qualifiers the oncologist offers, “We’ve caught it early.” “The chances of getting this under control are promising.” “Surgery alone may take care of things.”  They ring in your ears. But your heart and your mind hear something else entirely. They see the worst. The awful realization that your life might be ending, and that there is still so much you planned to do. Wanted to do. Needed to do.

The people you might be leaving behind.
The good you always meant to do.
The changes you intended to make.
The challenges you believed you would someday meet.

All of it floods your thoughts and your body at once. It spins together into a blinding, hopeless spiral of the life you could have had, if only you had known.

But don’t we all know that life is finite? Fragile? And yet we are stunned when that truth becomes more real than we ever imagined it could be.

Reality is something we push aside while we live our daily lives. Sleep. Wake. Dress. Eat. Work. Repeat. Over and over, without much thought.

The plans we always meant to follow through on slowly slip away with each step we take and each quiet thought we set aside. The day-to-day cycle becomes the pattern. The pattern becomes everything. It spins until we barely recognize that there was ever anything else.

Until the word, barely spoken, speaks: cancer.  And the pattern changes so quickly it disarms us.

Now the pattern is appointments. Recovery. Radiation. Chemo. Maybe immunotherapy. So much stops mattering. The world shrinks almost overnight.

Nausea.  Retching. Exhaustion.  Malaise.  Shrinking.  An endless fog of confusion.  Alternating devastation and hope.

We live for the day this aggressive pattern ends. We wait to be finished. To be well. To continue our lives. We believe that once this is over, everything we dreamed of will still be waiting for us.  But cancer always has the final word.

For some, life itself ends the conversation. For others, the collateral damage left behind by the disease, and even more by the treatment, forces life to be reordered. Reorganized. Reassembled. Reimagined.

The things we mourned when we first heard that word are no longer possibilities. We recover. We mourn. We go on. But we are never the same.

Regardless of the ribbon color. Despite the unpronounceable name that both specifies and reduces our lives. Not even when survival is the outcome.

We return to a pattern. A slightly altered one. Waking. Dressing. Eating. Working. Resting. Dreaming. A life reshaped by a single word that still echoes, long after it was first spoken: cancer.

Cancer Changes Everything – Jan Mariet’s A Day in the Life

“I’m Fine” – The Reality of Surviving Cancer – Jan Mariet’s A Day in the Life

Products That Make Life Easier When You are Battling Cancers of the Mouth, Tongue, or Throat – Jan Mariet’s A Day in the Life

Products That Make Life Easier When You are Battling Cervical Cancer or Cancers in the Abdominal or Pelvic Area. – Jan Mariet’s A Day in the Life

Where Were You? – Jan Mariet’s A Day in the Life