February 26, 2017

The Real Fear of Living with Chronic Fatigue.

“My role in society, or any artist’s or poet’s role, is to try and express what we all feel. Not to tell people how to feel. Not as a preacher, not as a leader, but as a reflection of us all.” ~ John Lennon


I recently moved to the other side of the world. On my own. To face new time zones, new people, new energies, air-born bugs, altitudes, attitudes and platitudes, with the intention of earning a living on my own. Writing seemed the way to go, just in case my bed (and my chronic fatigue) made me call it uncle again.

Lying here, in bed, I try to acknowledge my incredible bravery.

Or stupidity. Perhaps both. I’m okay with that. We never get anywhere in life by playing it too safe. Sometimes we have to do foolish things to live congruently with our own wild nature, lest we perish in a gilded cage.

Anyone who lives with chronic fatigue knows the ache for independence, life, adventure, freedom and love. For becoming everything that lies inside of us, just waiting for a long enough gap in the fatigue to break out and live our dreams.

But we needn’t have chronic fatigue to know the ache for deep connection with others.

Humans are a social species. Connection is what we’re wired for—one way or another.

I love my solitude with a passion I hold dear. But there are times when the isolation becomes too much. When fatigue and brain fog mar the heart, and walking the hard road, alone, becomes like walking in the face of stinging wind and rain—isolation turns to destitution. It’s times like these when fear can get in. Not the play kind of fears we used to dance with, but fears that rock us to our core.

The fear of being in a foreign place, unable to work, without the support of friends or family.

The fear of drifting away into a fine mist of unspent passion, while our bodies fail, again and again.

The fear of growing old before finding someone to love.

Of never finding the match for our soul.

Of wasting an entire lifetime of immense possibility and heart, rotting away, surrounded by four walls and an endless stream of spirit-numbing limitations.

A lifetime of purgatory, despite a spirit filled with a thirst for adventure, endless light and the best intentions.

While the raw weariness of this piece is something I wouldn’t normally share in public, it is not a feeling that is foreign to most who live with chronic illness. I wish to remind each of us—no matter who we are—that we each have incredible capacity for love, strength and resilience.

Each of us can be a sanctuary for others.

Especially if we have found home beneath our own skin.


Nothing comes to me.
Nothing flows.
I’ve petered out.

Pitter patter, like pebbles
ricocheting off a cobblestone floor,
echoing away into nothingness.

My once orchestic heart is filled with stony silence.
I have no more questions.

I am not defeated, no.
But my spirit hums low in its hearth.
Almost a whisper.

I avert my eyes, lest they betray my wavering heart.

The way it longs for shelter in a man’s warm embrace.

Lest they betray the pool of tears I have wiped from my determined face.

I have been strong for many years,
thanks to a daily choice for inner peace.
I will be again, no doubt.

But for now, my heavy head is bowed.
I dare not speak,
lest my voice crack and release
the last of my fighting spirit.

I dare not tell you how, for all these years, despite all things,
I have felt like a resplendent home;
a vessel patiently awaiting its cargo
until now.

Now, I ache for a home of my own.
A home with a heartbeat, that resonates in my belly and bones.

I long to see the recognition in those shimmering eyes.
To be seen, at my most humbled—
and be loved and held there.

Not for my vibrancy and strength.
Those things are all too easy to love.

But when I am frightened and alone.

When I am awkward and crude.

Pathetic, raw and a little unglued.

When I run in circles, after my own tail,
searching for courage and grace
with an invisible army of stinging fists.
Hardly able escape my own silliness.

It is easy to love—man, woman, or child—
when they are filled with the shining eyes of delight, passion and insight.
But can you love one whose temper and sorrow needs your embrace?
Someone who can hardly lift their watery eyes to meet your gaze?
A once vibrant spirit, curled into a ball.

Can you love me there?

And what about you?
I want to know:

Can you love you there, too?


“Bring me your suffering.
The rattle roar of broken bones.

Bring me the riot in your heart.
Angry, wild and raw.

Bring it all.

I am not afraid of the dark.”
~ Mia Hollow 



Author: Catherine Simmons

Image: Eric Kilby/Flickr

Editor: Nicole Cameron

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