You’re not alone

In this special poem written specifically for World Arthritis Day 2021, I try to share some insight on what it’s like to live with Arthritis and the ‘unseen’ side that only those who suffer know.


When remission builds you up
For a flare to cut you down.
When everyone around you
Cannot discern your yesterday to now.

When the strength to say ‘I can’t’
Is lost in someone else’s pain.
So we tell the world we’re fine
Carry the agony in place of shame.

When a consultant doesn’t understand
Or ask the reasons why –
It is more than test results and X-rays
And pain – why we cry.

When the fear of tomorrow
And grieving of yesterday
Steal us from this moment
Replacing memories of today.

When the guilt eats away
At any confidence you have left.
The weight of burden you now carry
Suffocates upon your aching chest.

When faced with an impossible choice
With the energy that remains.
To be a parent, present, or lay
In a body that wraps your mind in chains.

When the burning gets too much
And you’re ready to tap out.
Remember you’re not alone, please –
As in this desert of ignorance
There is a community, despite the drought.

Everything has its time

I stumbled upon this powerful image by Darshan Gavali and felt compelled to put words to it, describing my interpretation of chronic illness. I hope I’ve done it justice. First draft.

Remission (noun): a temporary diminution of the severity of disease or pain.

We forget, for a time, that there’s a debt that must be paid.

When the moments turn to hours and the hours’ blur with days.

Moments where we delude ourselves and forget about the pain.

Like it will never return, but with it, our hope can only fade.

As a well-used book, we never retain the same look, or feel.

Scars they cover scars; we can only adapt. Never truly heal.

The flares they grow longer, and with each, the realisation we can’t be the same.

For remission is not a solution but a temporary diminution…
of the severity…
of our pain.

The suffering

I did too much yesterday.
I didn’t drink enough.
I thought I was someone else,
I didn’t move as much.

I was lazy – ate terribly.
Delayed my biologic by three days.
I didn’t have time to be sick,
But now my health will pay.

Everything is heavy now.
Everything is sore.
Stiffness that only arthritis brings,
With the pain, the pills and more.

I did too much yesterday,
I flew too close to the sun.
As I wake with searing joints,
But of strong mind,
And a fire in my heart,
But unable to carry out their
will;

I know the real suffering has begun.

The distorted logic of depression

I’ve never found any answers at the bottom of a can,
But it often feels better than the pain, the turmoil and the rough touch of times passing hand.

I’ve never seen clearer through the powder of those extra pills,
It’s the wave of numbness – disconnect – and the promise of passing out in which I find the will.

I’ve never discovered the light in the darkness of rage,
Merely a release only violence can bring, pitting wits, unknown outcomes, through the blood, the spit and the haze.

I’ve never found reason in the condition I find myself in,
and I guess no amount of self-abuse will bring me any closer therein.

You are not alone

If you’ve ever stared at the sea and screamed, I hear you.
If you’ve ever woke from a dream in a frozen fear, I feel you.
If you’ve ever prayed to a being you’ve never believed in just to feel the words leave your head, passed your teeth, I believe you.
If you’ve ever scratched until you’ve bled to make sure you still feel, I see you.
If you’ve ever wanted to run with no idea of the destination, I’m beside you.
If you’ve ever felt loss without knowing what, I’m with you.

You are heard. You are felt, You are believed. You are seen. You are not alone.

What we started

What we started, you and I,
Could never be controlled.
For a deluded rare moment,
the reigns were mine alone to hold.

But as pain dug in its claws,
Dark clouds began to form.
They roll in unsighted,
Just needing the subtlest thought to be born.

Negative ideas multiply
Like the brain cells in which they’re created.
Why can a happy thought turn sour
But rarely more elated?

What we started, you and I,
Could never be controlled.
Pain turns to mental torment,
and I’m left helpless as it unfolds.

Very few will understand
The battle that rages within.
Crying alone at midnight,
As the house sleeps silently despite my interior din.

I have too many passengers on my bus,
They shout, I cannot cope.
I write down these words to control them
As they pick, they tug, they grope.

What we started, you and I,
Could never be controlled.
The pain and the depression,
Together, more than anyone can withhold.

I tried to be free

I tried to run, and I tried to be free.
Get back to someone that was like the old me.

I was determined. I excelled.
Felt like I could take on the world, to break from this hell.

But three days have passed, and I’m ready to tap out.
Shocks down my spine, sciatica so bad, I could shout.

I’m clawing at walls, a distraction from the pain.
Not sure if I have it within me to work through this again.

‘Practice makes perfect’ and ‘you get what you deserve’,
doesn’t seem applicable for the little my hard work has earned.

I tried to do something. I wanted to be free.
But now I’m just a bloodshot and broken, deflated version of me.

I’m tired, son.

I’m tired, son.

I’m tired of all the pain and not giving you all of myself.
When something negative preoccupies my mind instead of finding my centre – on those dark brown eyes, the high rounded cheeks that could almost burst with every belly laugh. The toothy grin that bites down on your bottom lip whenever your eyes search for the words that you are feeling.
Love.

When the fatigue makes me close my eyes and lose precious moments watching you play. Watching you grow. Watching you become something far better than I.
I’m tired of carrying myself like a desiccated willow when I should be your oak. Your inspiration. Your immovable rather than immobile object.
Pride.

I’m weary of being in a ‘panic box’ when the pain is too much, and all options are exhausted.
I’m sorry that some days I think about the number of tablets I have left in my arsenal more than if you’ve had your recommended dose of smiles. Of course, you have, you smile for the both of us, but I wish I could prescribe more.
Fear.

I’m sorry I cannot be there for you when I’m stuck in bed. Or take you to the playground whenever you ask.
Those days when we have to make fun with blankets, bedding for toys, as I lie on the floor with tears in my eyes. Preserving my batteries and minimising my output – calculating hours left in the day. Yet, still desperately trying to be a dad.
Regret.

I’m sorry. I’m just tired, son. Maybe tomorrow, hey?

My twisted valentine

Most loves are chosen,
Though the greatest never feel like a choice.
Masters of our destiny,
We like to feel that we decide who enters the door to our lives.

Love is a gift,
Something we send or accept, willingly.
And when unreciprocated,
Cuts deep into a core you never knew you held.

Love is a burden,
But a responsibility that lights our eyes as we carry.
As fires are extinguished all around us,
Love is a torch that flickers eternally through our lives.

My gift wasn’t chosen,
And it certainly isn’t the greatest love of my life.
But it is the most defining-
The burden of chronic illness (for life).